Pain Relief 

​I run a Facebook page for adults who had Perthes Disease, a childhood hip disorder that affects the growth of one or both of the hips.  Many experience painful after effects of having an undersized, deformed and weak hip.  One of the most frequently asked questions to my page is about how to manage the pain, not only hip pain, but often other pains that have arisen from years of walking and standing incorrectly.  A limp can lead to posture issues often resulting in pain in the lower back, neck and shoulders.  The tension in my shoulders eventually got so bad it travelled down my arms causing tennis elbow.  Some experience knee pain from walking crocked and even ankle joints can be affected for some.  

Over the years I have tried many different things to help with my pain.  These are some ideas and thoughts on the things I have come across for pain.  What kind of pain relief helps often depends on the type of pain and where it is on the body.  Muscle pain can be different to treat to nerve pain, and pain actually in the joints can be different again.  It can take time to find what works for an individual and can be a matter of trying different things till you find what works for you.  Not everyone responds the same to pain relief and some should be used carefully especially for the first time.  Most of these things are total cures, but can help reduce pain.  Most of my ideas are of course based on hip and chronic joint pain, but some can be effective for other kinds of pain as well.  

Pain Killer Medications

Over the counter medication is enough for many people.  There are several kinds available.  Classic ones include paracetamol, which I find helpful for headaches, general aches and fever.  Ibuprofen is good for inflammation in the joints such as with arthritis and I have found it very helpful over the years.  It must not be taken on an empty stomach though as it can over frequent use lead to stomach ulcers and eventually damage the lining of the stomach, but taken with food or a fatty drink such as milk it is fine.  Co-codamol is a mix of codeine and paracetamol.  You can only get a lower dose over the counter and you can not get pure codeine without a prescription. It is a strong drug and I only use it when regular paracetamol is not enough for the pain. I find it makes me drowsy so mostly only take it at night to help me sleep when I have a pain flare up.  It is very handy when in a lot of pain, but shouldnt be used too often as codeine can be addictive with prolonged use.  Some people still use aspirin for pain, but it is not recommended so much now by doctors or pharmacists since other more effective pain medications have become available.

Often for those with chronic pain issues over the counter medications are not enough and a prescription medication might be helpful.  You should always see your doctor and take only what they prescribe for you, never take pain killers prescribed for someone else.  Amitriptyline and gabapentin are used specifically to help with nerve pain such as sciatica and multiple sclerosis.  Pure codeine or stronger dose Co-codamol is often prescribed, but usually only short term. The strongest pain killers a doctor may prescribe are morphine based or morphine like (such as fentanyl and oxycodone).  They are sometimes only prescribed after seeing a specialist pain doctor as they have some serious side effects long term as they are so strong.    

Topical Medications

Topical medications are absorbed through the skin often in the form of a gel, cream or occasionally a spray.  They can be helpful for joint pain, such as arthritis and for muscular pain.  Some work with heat, usually a cream and some work with cold, usually known as freeze gel.  Some contain ibuprofen and can be useful for a quicker pain relief than tablets directly on the area that hurts.  However I found topical ibuprofen was not effective for as long as tablets.  I have found some topical medications useful as a short term gap between tablets when they have worn off, but you are not yet supposed to take another dose.  There are some prescription only ones often used as patches for things like morphine, but I have never been prescribed any myself.

Cortisone Injections/ Steroid injections

I have never had these because my surgeon did not think they would benefit me much.  They work as an anti-inflammatory on a specific area of the body.  They are most commonly used for joint pain, arthritis and sciatica.  I have come across many people in hip replacement groups online who have had them.  The results seem very varied and can come with side effects.  Some people experience several months of pain relief from them, some just a few weeks and some hardly anything at all.  You can only have up to three a year in the same area and some people report that they become less effective with each use.  There are recent studies to suggest that they may actually increase the onset of arthritis if you have them more than once.  They sound worth trying for some people, but you should be aware of the side effects and that they are not a permanent solution to pain.        

Heat 

Heat can be helpful with sore muscles, helping them to relax and relive tension.  There are various ways to apply heat.  There is the classic hot-water bottle, but I found a microwave wheat bag wraps around the joints better and often has lavender oil infused with it so it smells nice when heated up.  I find it most useful at night.  Stick on heat patches last between two to four hours and are very handy during the day when you have to move about.  When first applied they can get really hot and must not be applied directly to the skin.  There is no need to buy expensive brand name patches; I found the cheap store brand ones just as effective.  A warm bath can also be good to relax both muscles and mind.

Cold

Whilst heat is good for muscles, cold can help against pain caused by swelling.  After my hip surgery I used an ice gel pack that you put in the freezer.  Ice was recommended by the nurse, but gel packs dont leave a pool of water behind. 

TENS Machine 

A TENS machine works by passing electrical signals into the body.  Firstly this blocks the bodys pain signals that are normally transmitted through the nerve fibres to the brain.  Secondly it stimulates the bodys production of endorphins, which are our own bodys painkillers.  Sticky pads are attached to the area of pain and electric signals are sent from a portable battery operated device.  It uses very low levels of electrical signals that can be controlled at different strengths and types of signal from tapping to vibration.  I find it most effective for back pain, stiff shoulders and sore muscles.  It does take some getting used to and some people do not enjoy the feeling.  They vary a lot in price, but I found a fairly cheap one from my local pharmacy is effective.

Physiotherapy

For a lot of chronic pain issues physiotherapy can be very effective.  I have used it to help with both my hip muscle pain and my posture pains.  It has helped me become more flexible, stronger, gain better balance and improved my stance.  It can take quite a long time for it to have a noticeable effect on pain, being a gradual process of getting fitter.  Most people do not need ongoing appointments with a physiotherapist; three or four is often enough.  Then it is up to you to do the exercises at home most days.  Occasionally there is a need for more intensive physiotherapy often in a hospital gym setting, but this is usually after some kind of surgery.  Some physiotherapy exercises are designed for long term use, such as my posture exercises, because when I stop doing them for a few days my pain becomes worse again.  I have been doing some of my leg and hip exercises for years.  However some physiotherapy is temporary whilst getting over an injury or sickness.  My tennis elbow exercises were daily at first, but now I only have to do them as and when I feel the pain returning.  Some people struggle with physiotherapy as at first it can be quite painful to exercise when not having done so in a long time, but it can be worth persevering with. 

Hydrotherapy  

Hydrotherapy uses water based exercise led by a physiotherapist.  The water supports your weight making exercising the joint easier.  It can be excellent for those struggling after joint replacement surgery to get fit again or for arthritis.  However it can be hard to get as not every hospital has a hydro pool and it can be expensive to pay for privately.  Often a few sessions will suffice to learn the exercises and then you can do them for yourself at a regular swimming pool.    

General Exercise 

Whilst physiotherapy can be helpful with specific issues, more general exercise and fitness can help reduce some kinds of pain.  I found physiotherapy good for getting me to a level I can now work on my fitness in other ways.  Just walking more has helped me become less stiff.  Finding a form of exercise you enjoy is good for both physical and mental health.  I have always enjoyed swimming as a good way to stretch my sore joints.

Rest

With that said, knowing your limits is also important.  Not over doing it and taking a break can also help when you feel pain coming on.  Sometimes just a short rest can help to relax the muscles and relieve tension.  Occasionally a longer rest maybe required to give the body time to heal such as after surgery or illness.  I have found trying to push past my pain and keep going is not a good idea as it can lead to worse pain the next day.  

Pain Clinic 

If regular pain medication and other things are not helping you enough with you pain, your doctor may refer you to a pain clinic.  They are usually run by a team of doctors and physiotherapists.  The clinic programmes vary depending on your needs and what they have on offer.  I saw a pain specialist doctor and a physiotherapist.  They offer talks about understanding pain, which can help you to understand how to treat yourself for your pain, mentally as well as physically.  They offer a series of classes in various things including tai chi, yoga, hydrotherapy and circuit training.  They do not claim to totally eliminate your pain, but reduce it and help you cope better with it.  

Tai Chi  

I took the course in tai chi led by the pain clinic physiotherapists.  Tai chi uses a series of movements combined with relaxation and deep breathing techniques.  I found it helpful for my balance and flexibility.  It also helps me to feel somewhat relaxed and less stressed which is turn helps my pain, especially in my shoulders which are often tense.  It takes a while to get the hang of it and learn the movements, but with a good instructor it can be worth while.

Yoga

There are several types of yoga, some more focused on the mental side and some more on the movements.  Like tai chi it uses a combination of exercise and relaxation to help with flexibility, balance and mental wellbeing.  It is important to find the right yoga instructor because some seem to over do the exercise part to the point that it could make things worse for a chronic pain sufferer.  I have not done a whole course in yoga, but have learnt some of the basic moves using Wii Fit.  Over time a lot of the moves have become easier and I have defiantly found them beneficial for my fitness and pain issues.

Acupuncture

There are many kinds of alternative treatments, but I have chosen to write about acupuncture as it is one of the most commonly used and one of the few I have actually tried.  It uses very fine needles inserted into specific points in the body relating to where your pain is.  The needles are believed to stimulate activity in areas of pain resulting in the release of endorphins and scientists think it may also promote the release of steroids.  I tried it when I had a frozen shoulder and thought there was an element of truth behind it, but it was only mildly helpful.  It may have been the relaxed atmosphere and sense of calm that helped me more than the actual needles I am not sure.  However the effect it had wore off after only a few hours and I feel that it was not effective enough for the price they wanted to charge me after my first two trail sessions.

Massage 

A massage can be very helpful for pain the shoulders, neck and back.  If done well the effects can last several hours.  A huge part of it is how relaxed it makes you feel, helping to relieve tense muscles.  It can be done by a partner or close friend, but needs to be done carefully so as to avoid making pain worse.  A professional masseur should have some idea about common areas of muscle and joint pain and know how to work them safely to get the best results.

Surgery

Surgery is usually a last resort, but sometimes necessary.  It can help with a lot of types of pain, but is never an easy solution.  There is always a risk with any surgery and recovery can take time and effort.  My hip replacement surgery for example was a lot of work to recover from and mentally as well as physically exhausting, but worth while long term.  Some surgeries may only reduce pain, not totally eliminate it and some types of pain may not benefit from surgery at all.  It is definitely an option worth exploring if in a lot of pain for a long time.  However surgeons often expect non-surgical options to have been tried first. 

Cannabis/ CBD

As popular as a form of pain relief and now legal in more places I feel I should give a mention to cannabis.  However I live in the UK where it is still mostly illegal and have never tried it myself.  There is a growing body of scientific evidence that it is an effective pain killer, but the strain and dose should be carefully chosen so as to not experience so many side effects.  If legal here I would definitely try it, but I would be careful to use a knowledgeable source who could advise me on using it for pain.  In the UK CBD is legal, which is an extract of cannabis without the illegal part called THC.  Some people say they get benefits from CBD, but the scientific evidence for it is limited.  Some studies suggest it can have a very mild effect on pain and of course there is the placebo effect as well.  You can get it in several forms including drops, vape oil, edibles and as patches.  It should be noted that CBD products come in various strengths and some in fact contain only a very small amount of it.  To get a decent strength dose it can be quite expensive. 

If you experience intense pain frequently you should see your doctor.  They maybe able to help diagnose your source of pain which can help in finding the right treatments.  Pain can be referred pain from elsewhere in the body and have a cause you might not suspect, such as my wrist and arm pain being tennis elbow caused by my shoulder problems.  A doctor may have more ideas to try relating to your specific issues.  

Recommended reading- The Pain Relief Handbook by Dr Chris Wells and Graham Nown.  Although published in 1993 so possibly a little out of date in some areas since a lot more research has been done on pain since then, it still has a lot of worthwhile information.  Dr Wells helped establish the first pain management programme in the UK, which became the model for future pain clinics in the NHS.  

  
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My messed up body and mind 

​Employment Support Allowance (ESA) is a government benefit paid out to those who have a disability or health condition that affects how much you can work (www.gov.uk).  I have been in receipt of this benefit for a number of years now.  Previously I was on Job Seekers Allowance, but after a breakdown and my mental health issues getting worse again, I asked my doctor to sign me off as sick as I realised that holding down a paying job at that time was unrealistic.

Sometimes people question why I do not have paying work.  People do not see me on my worst days when I stay at home too ill to go out.  Yes I have worked hard on both my physical and mental health to get fitter and stronger, but I am still in a place I feel I would be too unreliable to keep a job. I have recently had a more intense period of health issues which give a good example of why I am still on ESA.  

I do not think I have one health condition that by itself would prevent me from working because none of them individually are deemed that bad medically.  However when you combine all of my conditions that is when I become more disabled by them.  One of my conditions can flare up and then trigger another and sometimes another.  My body sometimes only needs one thing to go wrong to throw it off balance. 

This is my recent health issues within the last year.  I am not sharing this for sympathy, but to show what it is really like to live with a range of health issues and why some seemingly fit for work really have more going on than you may realise.  

Firstly there is my depression.  It comes in phases; I can go for months or even a year or two without it being a real problem.  Then it can flare up again, usually brought on by a lot of stress going on in my life or something going wrong, over time it can build up and can take months to die down again.  I have currently had issues going on with my depression for the best part of a year to varying degrees.  It reached a point I went to see my doctor about it.

My doctor and I have decided to change my medication.  Sounds simple enough, but before I can take new medication I have to get off my old medication.  I have been on my old medication for about seventeen years and they are one of the hardest SSRI to come off, especially after so long.  So I am very gradually reducing the dose I am taking with strict instructions on how to do this from my doctor.  I think this has effected my sleep, which I already had issues for most of my adult life, but now it has become even more of a problem.  I can struggle to fall asleep for well over an hour and sometimes wake up several times in the night.  I also do not think I am sleeping as deeply.  As with many autistic people and those with OCD I already feel I have chronic fatigue as it is, so this is definitely a problem.

Then last January I started to experience some wisdom tooth issues, and it turned out to be an impacted tooth, meaning it was growing crocked and hitting bone.  After several months of dental appoints, antibiotics to reduce the swelling and waiting for a referral I had my tooth removed at the hospital.  Having a sore gum all this time probably was not helping my already low mood.

Removing the wisdom tooth itself was pretty straight forward, but afterwards was when it really became an issue.  I ended up with dry socket, which is when a blood clot fails to form or gets dislodged from the gum where the tooth was removed.  Dry socket in itself is quite painful, but it also can lead to an infection getting in, which is exactly what happened to me.  So I had my gum repacked and was given antibiotics. Antibiotics almost never fail to make me feel at least a little bit sick and they gave me two kinds of antibiotics, so I knew that was not going to make me feel great.

The day after starting the antibiotics I had my second Covid vaccination.  Two days later and I felt dreadful.  So I had a gum infection, antibiotics, vaccine reaction and had a rather low mood before that, then the final straw I started my period!  So anyone would be feeling not so great by this point.  However I do not think I react like a lot of people do when I am ill.

For one thing when I feel really sick I often end up in a state of panic.  I actually have a slight fear feeling sick as I know I do not cope well with it.  I tend to sleep for an awful lot of the time when ill and hide away.  I do not function well when ill and dealing with other people can just cause me a meltdown.   I have always had a low pain threshold as well.  

I know autism plays a role in how rubbish I am at being ill.  The fact I get anxious and panic, loose some ability to control my emotions and get really upset at times.  My really low pain threshold is also quite common amongst autistic people.  Some in fact feel very little pain, to a dangerous degree in some cases, but a lot of us are over sensitive to pain.   

I know that I would not have coped with going to any kind of paying job in the last few weeks.  I also think I would have struggled to cope on quite a number of days in the last year to work to the point I could have easily lost a job.  I do volunteer work and try my best to be reliable, but it helps to know I can cancel at fairly short notice if I really need to.  With fatigue, chronic pain that can flare up almost without warning sometimes and mental health that is often very sensitive, I feel I would not be of much use to an employer or able to earn enough self-employed, at least at present.  

Many others on disability benefits like ESA will have their own stories as to why they currently do not work.  An awful lot of them will also have a combination of reasons like me and not just one thing.  

Autism Communities on Social Media  

​Social media is a great way for autistic people to connect.  There are many groups and pages on Facebook for autistic and nuerodivergent people.  When newly diagnosed these groups can be a great way to find out more about being autistic and find people who understand what we are going though.  Some groups can also be helpful for those who want to find out more about autism because they know someone autistic or work with autistic people. However some of these groups and pages need to be careful which direction they are going in and what they choose to focus on.  Some are in danger of becoming caught up on rules and worrying about seemingly minor issues to the point that they become less welcoming to new members.  Arguing amongst ourselves does not help us support each other or make us look very good to others.  A few groups are making some actually autistic people feel excluded from the autism community.

When you first join a group many have rules that admin have created.  The idea is that it keeps a group safe and allows admin to keep a group with the original aim it was intended for.  There are however some nuerodiversity and autism groups with lists of rules so long and complicated that I give up even trying to learn them all.  I use rules in my groups; they are a helpful way to tell people why you are removing a post or comment, but I try to keep them simple and not have too many of them.  When rules are too complicated you can find yourself in some groups having your post rejected and that is just a waste of time.  

Some groups even have rules about certain words or phrases you can use when referring to autism or autistic people.  There is a group of autistic people who are preoccupied with the language around autism.  I understand some of it and agree that some words and phrases can be detrimental to us as autistic people.  For example I think functioning labels do us no favours because they ignore the fact that we fluctuate in how well we function.  When describing autism we must be respectful in our use of language.  However some take this to extremes and to the point they start finding fault with language other autistic people are using in an innocent way.  There are now so many words and phrases that can come across as offensive to some in these groups it can be hard to know how to phrase something.  Some have even said they do not post much in these groups because they are worried about saying the wrong thing and upsetting someone.  I respect any autistic persons right to describe themselves how they like, but in turn they should respect my right to do the same.

One of the terms some autistic people now have issue with is special needs, preferring the term additional needs.  However I think whatever term is used it would eventually become seen as offensive because it is not the exact words, but the way they are used in association with disabled people that is the problem.  Some now get annoyed by calling it Autism Spectrum Disorder or ASD because they have a problem with the word disorder.  I do understand why, but it is what we are told we have when diagnosed, so people often use it, especially when newly diagnosed.  When finding out your new diagnosis to then have other autistic people tell you to even call it ASD is wrong is confusing, but worse still is when some tell others it is offensive to use the term and have a go at them for it.  Personally I think it makes little difference if you call it ASD or not.  

When youre worried about how you phrase something in a post every time it gets difficult, especially for some autistic people who already struggle with communication and getting their point across.  I have seen people leave groups because they say they felt harassed just for not wording something in an exacting way.  I leave groups that I can see are doing this on a regular basis, with admin who do nothing to stop it and in some cases are actually a part of the problem.  

One of the things I most dislike is when someone in a group calls another member ableist.  Calling another disabled person abablist is harsh.  Disabled people can be abalist against other disabled people, especially those with different kinds of disabilities to their own, but the term should be used extremely carefully against disabled people.  Some seem to think anyone who disagrees with their point of view is ableist.  I think autism and nerodiversity groups could in some cases be better at allowing a difference of opinion, as long as it is not disrespectful or rude, differing opinions can make a discussion more interesting and give us another way to think about something.  

I am not the only one who feels some autism groups go to far with certain issues.  In response to a recent comment I made in a group someone else said that whilst they agree some things can be used as a put down, some autistic people take it to a whole other level and make it a war.  Another said they do not care what we are called as long as people understand us and treat us properly, with basic human respect like any other person.  

Getting caught up in rules and language like this can mean we miss more important things.  I have seen whole posts rejected due to one or two words used in a way someone disagrees with despite the fact the post was actually making a very valid point.  There are some things autistic people do need to worry about and should make a big deal, such as ABA therapy, lack of support and opportunities in education and employment and how hard it is to even be diagnosed amongst others.  Being sidetracked and focusing on exact words and overly complex group rules means we do not get to focus on the important stuff as much.  The fact that many autistic people suffer from fatigue means we should pick our battles so we do not spend our limited energy on the things that over all do not matter so much.

I still think autism and nuerodivergent groups and pages are worth being a part of, they can be helpful and supportive.  We just need to be careful which ones we join and allow to influence us.  We need to remember that these groups and pages do not represent all autistic people.  Some do try to take a more generalised view of autism and to be inclusive, but one person or even a group will never speak for every autistic persons experience or point of view.    

There are some Facebook pages and groups I particularly think are worth following which have helpful, interesting and supportive posts.  They feel like safe spaces that are well moderated. 

  • Nigh.functioning.autism- a page of memes and information that can be worth sharing.
  • Autability- a page that gives clear information about what being autistic can be like.
  • Sensory Stories- this page is mainly about sensory processing disorder or SPD which many autistic people have.  It has some very well illustrated memes which give a good impression of living with SPD.
  • Adult Autistic Spectrum Community- has both a page and a group.  The page has useful posts about autism and the group is a great place to ask questions and discuss autism issues with actually autistic people.
  • Nuerodivergent Rebel- this page accompanies this persons blog, which is worth following.  The page posts interesting and informative articles about autism and nuerodivergent issues from various sources and has some good memes worth sharing.  The comments below some of the posts can provoke interesting discussions. 
  • Neurodiversally Unbroken- this is probably my favourite page about autism and nuerodivergent issues I have come across on Facbook.  The page has useful and thoughtful posts.  The page admin keeps an eye on the comments on each post and sometimes responds in a totally non-judgemental way.  The page feels very safe and welcoming.

I also have a Facebook page to accompany my blog, search for Artificiallyhip.   

If you don’t love yourself, how the hell are you gonna love somebody else?

‘If you dont love yourself, how the hell are you supposed to love anyone else?’

Quite easily actually, as Scott Stablle writes in his 2016 blog, ‘its a lot harder to love and forgive and accept ourselves than it is to do with others, especially those we care about the most’. If we waited to get to the point of full blown self-love before we dared to love anyone else, this would be a desperately lonely planet. (www.huffpost.com/entry/you-can-love-someone-else_b_8238214 )

Sayings such as this are often posted on social media in the form of posters and memes. They are designed to be helpful to those with mental health issues and especially those with self-esteem issues. It is supposed to help boost your confidence and make you think twice about why you feel like you do, however as someone with mental health issues I think they come across as glib, unhelpful and annoying a lot of the time. Yes some of them do make me think twice about my thoughts, but normally I just end up thinking about them in an even more negative way and some of the phrases in the wrong moment can make me feel worse about myself.

‘Everything you need is already within you.’ That might be so, but that does not help me find it and to use it. Sometimes I do not even know what it is I do need to help. Unless you are actually in therapy or getting some kind of help with your mental health issues at the time saying this is not helpful.

Some of these phrases are way too simplistic and can feel rather dismissive of someones struggles. It can be belittling, as if you could just stop feeling that way if you tried harder. When feeling very low it can just make you feel even more of a failure and that you should not need to ask for help, when asking for help is often what you should be doing.

‘Heres to those who are struggling, but keep going everyday and dont give up, you are stronger than you realise.’ Except I have given up sometimes and do not manage to keep going everyday. I frequently take rest days for both my mental and physical health and I do not think that is a bad thing. If you suffer from chronic fatigue like me then trying to keep going when you are struggling can lead to total burn out and long term that means you end up giving up even more of your life. I think it is stronger to admit when you are struggling and to give up things that are causing you mental harm.

‘If it feels like your loosing everything, remember that trees loose their leaves every year and they still stand tall and wait for better days to come.’ Yes, but I am not a tree! There is a certainty with trees that the leaves will grow back and fairly soon, but no one can guarantee that my life will get better and how soon. There are quite a few sayings like this, comparing states of mental health to things that really have no logical connection. They often seem like utter nonsense to me and come across as if some self-help guru said it in their badly written book. They often have some faded background of the moon or a sunset or some form of water such as the sea as if to have a calming, soothing effect, but these tend to be the least helpful phrases of them all.

Whilst some of these posts on social media do help raise awareness of mental health issues and help to normalise talking about it, which is a good thing, sometimes they can trivialise the subject and minimise someones pain. Amongst some it has sort of become the latest trend in social causes, to show you care about mental health issues. These posts sometimes come across as virtue signalling, trying to win praise for showing support for something. It can often be more about attention seeking than actually wanting to help.

I am sure some are trying to help, but sometimes it feels ‘like people are celebrating an epidemic without solving it but naively think they are’, (Matt Klein, 2019, http://www.medium.com/on-advertising/two-types-of-tears-unpacking-the-rise-of-mental-health-memes-f7aafe1c68da) In other words however well meaning some of these posts are, they do nothing to actually help.

What can help more is being a supportive friend when they need you to listen and to actually help them with things they are struggling with. If you do want to post things on your social media then support links to mental health charities and links to mental health bloggers and sources of information are a lot more helpful than a picture of a random phrase done in a fancy font.
Thank you for reading my blog. If you like my work you can also find me on Facebook under Artificallyhip.

Autism Awareness Month My Thoughts 



April is World Autism Awareness Month.  It means autism charities and organisations try to further increase awareness of autism with information on social media, events, digital resources, partnerships with businesses and so on.  A lot of autistic bloggers get behind the month and post relevant things to support it.  I however will not be doing this and this is why.

There are too many awareness days, weeks, months for all kinds of things.  From diseases to mental health issues, sexuality to gender and even things that might surprise you like mathematics and statistics month to jazz appreciation month.  In the end it becomes lost in a sea of awareness or appreciation months and just another awareness thing.  It can become a little tricky trying to keep up with them all and in the end no one is more aware or appreciative of any of these things.

It is used by some charities as basically a month long fundraising event that actually has hardly any awareness involved.  Whilst I get that running a charity can be very expensive and fundraising is much needed, it gives the impression the month was set up just to make money.  I actually think the month was set up originally with good intentions and this was not the idea, even if I think the month is not worth having anymore.    

Some of the awareness things I come across are either stereotyping, patronising or even occasionally just wrong.  Clearly posted by a well meaning, but not actually autistic person some of the posts do nothing to help us.  I saw a post about traits to look for in autistic children, whilst I could relate to some of them, a lot of them could have been said about any child autistic or not and some were more stereotype traits that are not actually very common.  

Schools and business often take part in Autism Awareness Month, but all too often it is tokenism and done to make them look good, but actually achieves very little for autistic people.  For example autism hour in some shops, a specific hour once a day or week when shops make their stores more autism friendly by turning down the music, having softer lighting and having a more sensory friendly environment, along with other accommodations.  The idea was that shops then became more autism aware generally and hopefully carried on having an hour like this the rest of the year.  However many shops fail to do this and the staff do not seem any more autism aware than they were before.  In fact some shops actually say they are taking part in the hour and then according to some I have spoken to online who work in retail actually do very little during the hour to change anything.  Schools can download packs from charities and have autism awareness lesson or assemblies.  Many schools seem to do this and act like they are very supportive of autistic students, but then often fail to actually help an autistic student when it matters.  Until business start hiring more autistic people and actually agree to reasonable adjustments in the work place for autistics under disability law without making us have to fight for them and treat all autistic customers fairly they are hypocrites to call themselves autism friendly and should not be partnering with autism charities.  Until schools stop insisting on ABA or ABA like therapies and stop suspending or excluding autistic children without trying to help them, these autism awareness lessons are pointless.  

Autism awareness month can be used as a way to make a non autistic person feel good, without having much impact on actually autistic peoples lives.  The same can be said about other disability awareness months.  Stick a poster up, add a ribbon to your social media profile photo, maybe post a few autism memes to your social media wall and if youre feeling even more ambitious actually do some fundraising for an autism charity.  To me it can come across as look at me, Im so good and virtuous, look how much I support those poor unfortunate disabled people.  Although some may not even realise this is what they are doing and genuinely think they are helping, they often do it in a way that makes them look good and actually get the help wrong.  Posting memes that are wrong or supporting a charity that most actually autistic people do not like.  Plus how did a ribbon added to a social media profile photo ever achieve anything?  

A lot of autistic people no longer think we need awareness as most people have now heard of autism and would rather we renamed it autism acceptance month.  Then promote not trying to change us with ABA and actually try to understand us and think of us as not broken or useless.  Personally I doubt a name change would do much for the month and think we should focus on acceptance all year round and not focus too much effort onto just one month each year, but spread it out across the year.  

A note to American readers and other countries where Autism speaks are a big charity.  This charity here in the UK did not get very far when it tired to come here, but in America I know it has basically dominated world autism awareness month for some years now.  Please ignore their campaigns and do not fundraise for them, do not light up your social media page blue or add a blue ribbon to a profile photo.  I gather from a lot of American autistic people that they are out to try and find a cure for autism and spread a lot of miss information about it.  They dismiss actually autistic peoples opinions on a lot of things and have some very worrying ideas that are spreading beyond America.  

If you do want to be a part of world autism awareness month then pass on autistic peoples own memes, blogs, social media posts about it and listen to what autistic people themselves have to say. 

If you would like to see more posts relevent to my blogs and research follow me on Facebook, search for Artifucallyhip.

 

Autisim is not a stereotype 

Autistic people vary, hence why it is called a spectrum.  There are lots of stereotypes about autistic people, some of which are true to me and some of which are not.  Of course stereotypes come from somewhere and will be true to some autistic people, but no autistic person has them all.  These are some of the stereotypes I come across and more about them.

  • All autistic people are  severely learning disabled and need some sort of carer

Well I am autistic and I live alone, no carer and no support worker.  Technically I probably do have a learning disability, but not what Americans call an intellectual one. I suppose I do get more support from my parents than a lot of people my age, but I dont see them everyday and I can manage most everyday tasks by myself.  Some autistic people do have carers that visit them at home or even live in supported accommodation, but this will be a co morbid learning disability not the autism itself.

  • Autistic people have some amazing skill and are savants 

I do not have an amazingly above average skill at anything as far as I know.  Savants as those with an amazing one off skill are known are really rare, even amongst autistic people.  

  • Autistic people are very quite, often mute

A lot of autistic people are very quite or mute, but a lot are actually very good at talking.  I talk so much I could be what some call hyperverbal and am in no way a quite person.  

  • Being autistic means being an introvert and not enjoying being sociable 

Along with the assumption we are all quite people, it is often assumed we are all introverts who avoid social interaction whenever possible.  However I am an extrovert and I enjoy being with my friends and socialising.  I do like some alone time, in fact I need it from time to time to recharge my social batteries so to speak, but too long alone and I actually get quite lonely and miss people.  I have never been in a position to describe myself as hugely popular, but that is not the same as being an introvert.

  • Autistic people do not drink alcohol

Along with the assumption we do not enjoy socialising; people are sometimes surprised that I drink.  I enjoy nights out and drinking with my friends.  I did have a faze when I gave up alcohol, but I decided that I actually quite liked drinking and seeing as I had never had a problem with alcohol decided it was fine for me to have a drink now and then.  There are quite a few autistic people who do not drink because they do not like the way they are when they are drunk or it is just not the kind of thing they enjoy, but plenty of us do drink alcohol.   

  • Autistic people struggle to understand their own and other peoples emotions

There are some autistic people who struggle with knowing what they are feeling, but most do know how they feel.  What some struggle with is putting across their emotions to other people.  Some find it tricky to find the right words to describe how they feel and some do not always have the response to an emotion others may expect, making it look like they do not understand how they are feeling.  Knowing how others around us are feeling can be tricky at times for anyone autistic or not, but on the whole autistic people do have empathy.  I like to think I am generally good at working out how others are feeling.  What I find tricky is having the appropriate response to certain emotions in certain situations, although I think I have got better at this over the years.  In fact some autistic people feel others emotions so strongly they tend to avoid emotional situations where possible.

  • Autistic people have no imagination and do not like fantasy 

Some people seem to think autistic people cannot imagine anything at all and have to be able to see something to comprehend it.  I have always had a very vivid imagination and am good at understanding things in the abstract.  I also always enjoyed role play as a child and pretending.  I am not sure where the idea that we do not like fantasy comes from because many autistic people enjoy it very much, both as books and films.  There are many autistic people who spend hours discussing fantasy worlds and writing fan fiction online.

  • Autistic people are all very serious, with no sense of humour and do not understand sarcasm 

Whilst we can be very serious about a lot of things others may find amusing, a lot of us do enjoy comedy.  I love comedy; some of my favourite TV shows are comedies and I enjoy watching stand-up comedians as well.  Some say autistic people do not understand sarcasm, but I really like a lot of comedy based around it.  I have also been known to use sarcasm myself.  There are autistic comedians and comedy actors who are brilliantly funny.  

  • All autistic people flap their arms or rock back and forth

Some autistic people do flap their arms or rock as a form of stiming.  Whilst I do stim, I do not do either of these.  I tend to use my hands against each other when I stim.  Stimming is very varied and a lot of autistic people stim in a more subtle way.  Some play with their hair, have an object they fiddle with or wiggle their feet.

  • Eye contact is impossible or at least very hard for us

This one is actually half true; many struggle to make eye contact with others.  I can make eye contact, but it does not always come naturally to me.  In some situations I have to actively think about doing it.  Some say they actually find eye contact painful, but a lot of us can do it if we have to.  Some autistic people do not seem to have any issues with eye contact though.  

  • Autistic people cannot tell a lie

I admit to not being a very good liar, but have been known to get away with a few little white lies before.  Whilst some autistic people are very uncomfortable with lying, some seem to be fantastic liars.  

  • Sport is something all autistic people dislike

I am not into sports much, but I do like swimming and I will happily watch international level gymnastics or ice skating on the TV.  A lot of autistic people do have less than great coordination, struggle with dexterity and find catching and throwing a ball difficult, as I did, which can put you off playing sports.  However some autistic people love sports and there are some who make it to professional level.

  • Autistic people cannot drive

I do not drive, but there is no medical rule that says autistic people can not drive.  Many do drive very well and even have jobs that are driving based.  Some do say they find driving very stressful, but some love it and say driving is actually good for their anxiety as it is a distraction from it.

  • Autistic people do not have sex

This one is very far from true.  Lots of us enjoy sex and whilst some say they are not very keen on it, this is true of the general population.  Some people just enjoy sex more than others and some people enjoy it more with the right person, nothing to do with being autistic.  This could actually be a dangerous stereotype as it could lead to a lack of sex education in some cases.  No matter if you think an autistic person has an interest in sex or not, understanding it is very important because they could become interested in it one day or they could be left very vulnerable.

  • It is not possible for autistic people to have children

Some seem to literally think we biologically cannot have children.  This shows a huge lack of understanding what autism actually is.  As a brain processing disorder, it does not affect reproductive organs.  Some I suspect when they say this actually mean we shouldnt have children, which is both wrong in many cases and extremely rude.
A lot of these stereotypes make assumptions about what autistic people can and cannot do.  We are like everyone else and vary in our skills.  Please stop assuming what we are capable of.  Some of the traits such as eye contact and understanding emotions are used as part of the diagnostic criteria, however no autistic person has every diagnostic trait and some have them to a lesser degree than others.  Autistic people do not want things they are capable of or enjoy doing denied to them due to wrong assumptions made about us.

Thank you for reading my  blog.  You can also find me on my Facebook page Artificallyhip 

My Pain Story Part 4

​This is the latest update on my chronic joint pain and on my efforts to lesson that pain.  In my last update I saw a delay in the local pain clinic services due to lockdown last spring.  They got back in touch with me last May with a letter informing me of an appointment with the pain clinic doctor I saw previously.  This was to be a phone appointment due to still being in lockdown.  I was not expecting to hear from her, but was pleased they still had me on their list.  The appointment was really just a check up to see how things were going and to make sure I still wanted to be on their list when services resumed again.  It was reassuring to be told that I could pick up where I left off after lockdown.  

The next communication from the pain clinic came in September.  I had a month to get back in touch and book an appointment with a pain specialist physiotherapist or they would assume I no longer wanted their services.  I got back in touch almost instantly.  Later that month I had my phone appointment with the physiotherapist.  She explained they were still unable to offer services in person, but were doing some things online.  She asked about my pain in detail and together we decided that the tai chi would still be something I could benefit from.  As suggested I had a go at some of the tai chi videos on the pain clinic website.  From the first try I felt it was something I would enjoy doing.  It seems to be about mindfulness with exercise which builds on things I have done previously both as a drama student and in laughter yoga classes that used mindfulness as a wind down at the end.  

Meanwhile as I was waiting for the first tai chi class, I started using Wii Fit.  I got a second hand Wii for my birthday with Wii Fit.  Having previously tried a Wii some years before and have seen Wii Fit I thought it might be a good way for me to motivate myself to get fitter.  Since mid September I have been trying to use Wii Fit for at least fifteen minutes most days, often longer.  I have found it extremely helpful to get me stronger and fitter.  It uses yoga, muscle exercises, aerobics and balance games.  It lets you work at your own pace and teaches the exercises one at a time, helping me to gain confidence in my abilities gradually.  Some exercise classes throw you in at the deep end and expect you to already be reasonable at things, with the Wii it lets you start at whatever level you are at even if that is absolute beginner.  I like how you score points and get feedback so you can see the progress you are making and what you need to work on more.  At the end of each training session you can take a body fit test and it will see how you are doing fitness wise overall.  My overall fitness scores have definitely been improving over the months. 

Then in October and November I had two video appointments online with the physiotherapist from the pain clinic.  She introduced me to tai chi with the basic stances and a few of the easier moves.  I practised between appointments and felt like I was getting the hang of it well.  Since I seemed to be enjoying it and benefiting from it, the physiotherapist put me forward for the group course.  Over eight weekly sessions it teaches tai chi adapted for pain management.

I had some technical issues at first trying to find a device that would work the application they use for the classes, since my tablet refuses to work with a rival companys video chat.  (They do assume you have the right technology and for some people this could be a serious issue.)  However I figured out a way to do it on my phone, although rather a small screen it did work well enough.  

The classes lasted about an hour each and gradually taught us the moves of tai chi building each week a longer routine of movements.  There are a few kinds of tai chi and the pain clinic use Shibashi Qigong which has eighteen moves in total.  Some of the moves combine with others making it easier to remember them all.  The classes also focused on body awareness and being present in the moment in a mindful way.  We shared at the end of each class together with how we were getting on with the tai chi during the week and how it was helping us.  There were about six of us in the class and we all agreed that tai chi was of some benefit to chronic joint pain.  

Tai chi is more of a work out than you may think.  Despite being fairly slow paced it stretches out muscles, helps posture, and improves breathing technique which eventually can improve lung capacity.  I find tai chi mentally beneficial as well.  The mindfulness is relaxing which is turn helps my muscles to relax; this is especially helpful for my tense shoulders.  

My shoulders are one of my most painful areas, especially the right one.  The physiotherapist says this comes from years of having had a limp that caused me to walk more on my right side.  Also previously having used walking aids such as crutches and a stick have probably not helped my shoulders.  Whilst doing tai chi I can actually feel my shoulders lowering and they feel as if they are less heavy.

Now that I have completed the tai chi course I need to keep up the practise of it so that I continue to benefit from it.  I use the videos on the pain clinic website fairly regularly and try to practise some of the stances and moves at home when I can.  Music can be helpful to a practise, especially calm classical music.  I am still using Wii Fit regularly and plan to buy the extension pack to this soon once I have reached a point I need to advance my workouts.  I feel fitter now than I probably have been for most of my life.  I can walk faster and further than I used to and feel less out of breath walking up hill than I once did.  I still get frequent joint pain, but less debilitating levels than it was most of the time.  I have managed to reduce the number of pain killers I take a fair amount, although I still take more than some people do.  Cold weather and having a period can cause my joint pain to flare up again sometimes and I still have to be careful not to over do the exercise and walking or I can suffer for it the next day.  

I will write another post on this one day if and when something interesting occurs with my pain.  I welcome questions and comments on my posts. 

Tai chi pain clinic videos:

https://www.torbayandsouthdevon.nhs.uk/services/pain-service/reconnect2life/improving-health-and-fitness/tai-chi/tai-chi-for-health/ 

You can find more relevant posts about my usual blog topics on my Facebook page Artificallyhip.

 

Autism Glossary 

A glossary of terms commonly used when talking about autism. When I first joined autism communities online some words and phrases were confusing terms for me and I thought it would be helpful to have a glossary of words to show how they specifically relate to autism and the autistic community.

The links used are where my main sources of information for each term came from, although I have often tweaked them to suit my needs and to what I feel fits best. The links provide more information on the terms should you be interested in finding out more.

ASD- Autism Spectrum Disorder

I did not even know where to start with describing what ASD actually is, so for this one I left it up to others with the quotes I think fit best.

‘Autism spectrum disorder (ASD) is a developmental disorder that affects communication and behaviour. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), people with ASD have: Difficulty with communication and interaction with other people restricted interests and repetitive behaviours

Symptoms that hurt the person’s ability to function properly in school, work, and other areas of lifeAutism is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience.’ (https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml)

‘Autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain. Scientists do not know yet exactly what causes these differences for most people with ASD. However, some people with ASD have a known difference, such as a genetic condition. There are multiple causes of ASD, although most are not yet known.’

(https://www.cdc.gov/ncbddd/autism/signs.html)

Neurodversity/ Neurodivergent/ Nuerotypical

Neurodivergent people ‘have an atypical configuration, for example a person who has a developmental disorder and/ or a mental illness’, (www.disabled-world.com/disability/awearness/neurodiversity/).

Some types of recognised nureodivergence include autism, dyslexia, dyscalculia, epilepsy, ADHD, OCD and Tourette Syndrome, alongside other developmental and mental health disorders.

A nuerotypical person is someone who is not nurodivergent and has what is generally considered a typical brain arrangement. Often referred to as an NT person within the autistic community.

DSM- The Diagnostic and Statistical Manual of Mental Disorders/ ICD- International Statistical Classification of Diseases and Related Health Problems

The DSM is published by the American Psychiatric Association and is the manual used to diagnose autism in the USA.

The ICD is a medical classification list by the World Health Organisation (WHO).

Although the DSM is not commonly used in the UK, it is likely to have an influence on the next edition of the ICD. The DSM manual was recently updated and a revised edition of the ICD is expected in January 2021.

Aspersers

Asperger’s used to be thought of as a separate condition to autism. But in 2013, the newest edition of the standard book that mental health experts use, called The Diagnostic and Statistical Manual of Mental Disorders (DSM-5), changed how it’s classified. Now, Asperger’s syndrome is technically no longer a diagnosis on its own. It is now part autism spectrum disorder (ASD). Even so, lots of people still use the term Asperger’s.

Asperger’s type ASD people don’t have the learning disabilities that many autistic people have, but they may have specific learning difficulties. They may have fewer problems with speech but may still have difficulties with understanding and processing language.

(https://www.webmd.com/brain/autism/mental-health-aspergers-syndrome) (https://www.autism.org.uk/advice-and-guidance/what-is-autism/asperger-syndrome)

Self Diagnosis

Some adults identify as autistic without having an official diagnosis. After doing their own research on autism and sometimes chatting with other autistic people, they can come to the conclusion they are autistic. Some then go on to be formally diagnosed, but many do not. Some would like to be diagnosed officially, but find barriers stopping them. Some struggle to find a doctor who will refer them for the testing, it can be hard to be taken seriously by some doctors about autism. In some areas there is a lack of adult autism specialists to even refer someone to. Some can not afford to be tested, it can cost a lot of money and many insurance companies in the USA do not cover it. Some do not feel the need for a formal diagnosis; they feel they would not gain anything from it having already found support and information for themselves, often online. Self diagnosis is widely accepted by the autistic community.

Co morbid Condition

Co-morbidity is the presence of one or more additional conditions often co-occurring with a primary condition. ‘More than half the people on the spectrum have four or more other conditions. The types of co-occurring conditions and how they manifest varies from one autistic person to the next,’ (www.spectrumnews.org/news/conditions-accompany-autism-explained/)

ADHD- Attention Deficit Hyperactive Disorder

Attention-deficit/hyperactivity disorder (ADHD) is a mental health disorder that includes a combination of persistent problems, such as difficulty paying attention, hyperactivity and impulsive behaviour. ADHD causes hyperactivity and impulsive behaviour. People with ADHD often have trouble concentrating on tasks, are easily distracted, often have difficulty sitting still and often interrupt people when they are talking. Several traits of autism and ADHD overlap and this can cause incorrect diagnosis sometimes, although you can have both together.

(https://www.healthline.com/health/adhd)

ADD- Attention Deficit Disorder/ PDA- Pathological Demand Avoidance

Pathological Demand Avoidance is an Autism Spectrum Condition. Oppositional Defiant Disorder is not an Autism Spectrum Condition.

PDA is when there is an avoidance of the everyday demands made by other people, due to high anxiety levels when some feel that they are not in control. The main characteristics of PDA are resisting and avoiding everyday demands, using social strategies (such as distraction) to avoid demands, excessive and sudden mood swings and obsessive behaviour, often focused on people rather than objects.

Oppositional defiant disorder (ODD) is a disorder that is defined by a pattern of hostile, disobedient, and defiant behaviours. ODD is also characterized by angry and irritable moods, as well as argumentative and vindictive behaviours. These people will not only do things to purposely cause conflict or to purposely annoy the people around them, but they will oftentimes place the blame on others. ODD is most common in children, but a few never seem to grow out of it and will be ODD as an adult.

One difference between those with ODD or PDA is that thoses with ODD are less keen on embarrassing themselves in front of their peers; they are keen to fit in and can socialise in a typical way. People with PDA on the other hand, are more likely to have unpredictable outbursts, even in front of their peers, and they tend to try and control all social interaction without understanding why their peers do not like it and then shun them.

(https://www.stephstwogirls.co.uk/p/what-is-pda-pathological-demand.html) (https://www.valleybehavioral.com/disorders/odd/signs-symptoms-causes/)

OCD- Obsessive Compulsive Disorder

OCD has two main parts, obsessions and compulsions. Obsessions are unwelcome thoughts, images, urges, worries or doubts that repeatedly appear in the mind. They can make someone feel very anxious or unconfutable. Compulsions are repetitive activities that done to reduce the anxiety caused by the obsession. It can be something like repeatedly checking a door is locked, repeatedly saying the same phrase over and over or making sure your shoe laces are tied in the correct way. OCD can fluctuate in severity, some days it can be manageable to the point it hardly shows and others it can make life really difficult. It can be worse when stressed or upset. There are several overlaps between autism and OCD, but the main difference is for autistic people, repetitive behaviours are often soothing and a source of enjoyment, but if you have OCD, the obsessions and compulsions are intrusive and upsetting. Quite often people have both OCD and autism.

(https://www.autism.org.uk/advice-and-guidance/topics/mental-health/ocd/autistic-adults) (https://www.mind.org.uk/information-support/types-of-mental-health-problems/obsessive-compulsive-disorder-ocd/about-ocd/)

SPD- Sensory Processing Disorder

Hypersensitivities may include an extreme response to sudden loud noises, may notice background noises others do not, hates being touched or fear of climbing or falling even when there is no real danger.

Hyposensitivities may include a constant need to touch people or surfaces even when inappropriate, may not understand about personal space, enjoys movement based play, very high pain tolerance and possibly a thrill seeker to a dangerous level. SPD used to be thought of as something only autistic people could have, but although many autistic people have it, it is now thought of as a stand-alone disorder.(https://blog.brainbalancecenters.com/2012/04/signs-and-symptoms-of-sensory-processing-disorder)

APD- Auditory Processing Disorder

An auditory processing disorder causes difficulties distinguishing subtle sound difference with words such as cat or bat. Focusing on the important sounds in a noisy setting can be difficult and remembering what has just been said can be tricky. APD is not related to hearing loss, the sounds can be heard, but the brain has trouble processing and making sense of it. APD is fairly common in people with autism.

(https://www.understood.org/en/learning-thinking-differences/child-learning-disabilities/auditory-processing-disorder/understanding-auditory-processing-disorder)

VPD- Visual Processing Disorder

As with auditory processing disorder, visual A glossary of terms commonly used when talking about autism. When I first joined autism communities online some words and phrases were confusing terms for me and I thought it would be helpful to have a glossary of words to show how they specifically relate to autism and the autistic community.
The links used are where my main sources of information for each term came from, although I have often tweaked them to suit my needs and to what I feel fits best. The links provide more information on the terms should you be interested in finding out more.

Self Diagnosis

Some adults identify as autistic without having an official diagnosis. After doing their own research on autism and sometimes chatting with other autistic people, they can come to the conclusion they are autistic. Some then go on to be formally diagnosed, but many do not. Some would like to be diagnosed officially, but find barriers stopping them. Some struggle to find a doctor who will refer them for the testing, it can be hard to be taken seriously by some doctors about autism. In some areas there is a lack of adult autism specialists to even refer someone to. Some can not afford to be tested, it can cost a lot of money and many insurance companies in the USA do not cover it. Some do not feel the need for a formal diagnosis; they feel they would not gain anything from it having already found support and information for themselves, often online. Self diagnosis is widely accepted by the autistic community.
Co morbid Condition
Co-morbidity is the presence of one or more additional conditions often co-occurring with a primary condition. ‘Moe than half the people on the spectrum have four or more other conditions. The types of co-occurring conditions and how they manifest varies from one autistic person to the next,’ (www.spectrumnews.org/news/conditions-accompany-autism-explained/)

ADHD- Attention Deficit Hyperactive Disorder
Attention-deficit/hyperactivity disorder (ADHD) is a mental health disorder that includes a combination of persistent problems, such as difficulty paying attention, hyperactivity and impulsive behaviour. ADHD causes hyperactivity and impulsive behaviour. People with ADHD often have trouble concentrating on tasks, are easily distracted, often have difficulty sitting still and often interrupt people when they are talking. Several traits of autism and ADHD overlap and this can cause incorrect diagnosis sometimes, although you can have both together.

(https://www.healthline.com/health/adhd)

ADD- Attention Deficit Disorder/ PDA- Pathological Demand Avoidance

Pathological Demand Avoidance is an Autism Spectrum Condition. Oppositional Defiant Disorder is not an Autism Spectrum Condition.

PDA is when there is an avoidance of the everyday demands made by other people, due to high anxiety levels when some feel that they are not in control. The main characteristics of PDA are resisting and avoiding everyday demands, using social strategies (such as distraction) to avoid demands, excessive and sudden mood swings and obsessive behaviour, often focused on people rather than objects.

Oppositional defiant disorder (ODD) is a disorder that is defined by a pattern of hostile, disobedient, and defiant behaviours. ODD is also characterized by angry and irritable moods, as well as argumentative and vindictive behaviours. These people will not only do things to purposely cause conflict or to purposely annoy the people around them, but they will oftentimes place the blame on others. ODD is most common in children, but a few never seem to grow out of it and will be ODD as an adult.

One difference between those with ODD or PDA is that thoses with ODD are less keen on embarrassing themselves in front of their peers; they are keen to fit in and can socialise in a typical way. People with PDA on the other hand, are more likely to have unpredictable outbursts, even in front of their peers, and they tend to try and control all social interaction without understanding why their peers do not like it and then shun them.

(https://www.stephstwogirls.co.uk/p/what-is-pda-pathological-demand.html)

(https://www.valleybehavioral.com/disorders/odd/signs-symptoms-causes/)

OCD- Obsessive Compulsive Disorder

OCD has two main parts, obsessions and compulsions. Obsessions are unwelcome thoughts, images, urges, worries or doubts that repeatedly appear in the mind. They can make someone feel very anxious or unconfutable. Compulsions are repetitive activities that done to reduce the anxiety caused by the obsession. It can be something like repeatedly checking a door is locked, repeatedly saying the same phrase over and over or making sure your shoe laces are tied in the correct way. OCD can fluctuate in severity, some days it can be manageable to the point it hardly shows and others it can make life really difficult. It can be worse when stressed or upset. There are several overlaps between autism and OCD, but the main difference is for autistic people, repetitive behaviours are often soothing and a source of enjoyment, but if you have OCD, the obsessions and compulsions are intrusive and upsetting. Quite often people have both OCD and autism.

(https://www.autism.org.uk/advice-and-guidance/topics/mental-health/ocd/autistic-adults)

(https://www.mind.org.uk/information-support/types-of-mental-health-problems/obsessive-compulsive-disorder-ocd/about-ocd/)

SPDSensory Processing Disorder

Sensory processing disorder is when the brain has trouble receiving and responding to information that comes in through the senses. Sensory issues are usually defined as either hypersensitivity (over-responsiveness) or hyposensitivity (under-responsiveness) to sensory input.

Hypersensitivities may include an extreme response to sudden loud noises, may notice background noises others do not, hates being touched or fear of climbing or falling even when there is no real danger.

Hyposensitivities may include a constant need to touch people or surfaces even when inappropriate, may not understand about personal space, enjoys movement based play, very high pain tolerance and possibly a thrill seeker to a dangerous level. SPD used to be thought of as something only autistic people could have, but although many autistic people have it, it is now thought of as a stand-alone disorder.

(https://blog.brainbalancecenters.com/2012/04/signs-and-symptoms-of-sensory-processing-disorder)
APD- Auditory Processing Disorder

An auditory processing disorder causes difficulties distinguishing subtle sound difference with words such as cat or bat. Focusing on the important sounds in a noisy setting can be difficult and remembering what has just been said can be tricky. APD is not related to hearing loss, the sounds can be heard, but the brain has trouble processing and making sense of it. APD is fairly common in people with autism.

(https://www.understood.org/en/learning-thinking-differences/child-learning-disabilities/auditory-processing-disorder/understanding-auditory-processing-disorder)
VPD- Visual Processing Disorder
As with auditory processing disorder, visual processing disorder is not about a visual impairment, but when the brain has trouble making sense of the visual input it receives. Some have trouble judging distances, with colour, size and direction. Again VPD is fairly common in people with autism.

(https://www.readandspell.com/visual-processing-disorders)

NVLD- Nonverbal Learning Disorder

A non-verbal learning disorder is characterised by good verbal skills whilst struggling with non-verbal ones. Picking up on body language such as voice tone and facial expressions can be tricky. It can affect social skills making it tricky to keep friends as social cues can often be missed. People with NVLD often talk a lot, but do not always share in a socially acceptable way. Spatial awareness can be another common issue with NVLD along with coordination issues and trouble with maths especially fractions, geometry and word problem. Although NVLD does not appear in the Diagnostic and Statistical Manual of Mental Disorders and is not yet an officially recognised condition there is a growing awareness of it amongst medical professionals. Also there may be more specific conditions that are diagnosable as part of the NVLD that could get someone more support in education and disability services.

(https://www.understood.org/en/learning-thinking-differences/child-learning-disabilities/nonverbal-learning-disabilities/understanding-nonverbal-learning-disabilities)

(https://nvld.org/non-verbal-learning-disability/)

Learning Disability/ Intellectual Disability

Slightly confusingly here in the UK we often refer to learning disabilities as learning difficulties. Whilst we call intellectual disabilities learning disabilities.
A learning disability or difficulty is a condition that impacts on someone’s ability to learn something at the same rate as their peers. Having a learning difficulty does not make someone less intelligent, it means they have difficulties in a specific area. There are many kinds of learning difficulties including dyslexia, which affects someone’s ability to read and comprehend text. Dyscalculia, which affects maths capabilities and sometimes problem solving. Dysgraphia, which affects the physical act of writing and written expression, to name a few. Autistic people commonly have some kind of learning difficulty as a comorbid condition.

(www.understood.org)

An intellectual disability affects the way someone understands information and how they communicate. This means they can have issues learning new skills, understanding complex information and cooping independently. A learning disability can vary in severity. Some can look after themselves and live independently as adults, but take a while to lean new skills. Some need help with everyday tasks for their whole lives. Causes can include down syndrome, fragile x syndrome, cerebral palsy, problems in pregnancy or birth and exposure to certain diseases at crucial stages of development. About 1% of the general American population is thought to have an intellectual disability and about 10% of those with intellectual disabilities are thought to have autism.

(www.aruplab.com/testing/autism)

Savant Syndrome

A rare condition where someone with a developmental condition such as autism can have an extraordinary talent that stands out in contrast to their overall disability. Savant skills can exist in any area, but most commonly seem to occur in art, music, maths and memory recall. One in ten autistics are said to be savant, but there are even rarer cases of prodigious savant syndrome where an individual’s skill goes beyond what is seen in the general population. (https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0237-1) (www.ncbi.nlm.gov/pmc/articles/PMC2677584/)

Meltdowns

A meltdown is a reaction to sensory overload. To outsiders it can look like a temper tantrum, but it is not. A tantrum is more controlled and used by someone to get their own way. A meltdown is not so controllable and it is not something someone chooses to have. A meltdown can be triggered either suddenly, almost like a seizure or can be the result of lots of things over time building up and becoming too much. My meltdowns tend to be very angry and often involve a lot of shouting, stomping and crying, but some people also self harm and break things during a meltdown. A meltdown is horrible to go through and can be like all my recent emotions trying to express themselves and escape all at once. Feelings that tend to trigger meltdowns include frustration, confusion and anxiety.
Shutdowns
Some autistic people have shutdowns which can appear to be a bit like the opposite of a meltdown. A shutdown is about withdrawing from the world around them. It can be someone is unresponsive to communication; some hide away and some literally will be unable to move from the spot they are in no matter where they are even a public place. Shutdowns often have the same triggers as meltdowns and some meltdowns can turn into shutdowns, starting off with a meltdown then withdrawing till stress levels have reduced.

(https://www.autismwestmidlands.org.uk/wp-content/uploads/2017/11/Meltdown_shutdown.pdf)
Stimming (Self-stimulatory behaviour)

Stimming is a repetition of physical movements, sounds, words, or moving objects. Almost everyone stims in some way, however in autistic people stims can be far more obvious and can carry on longer than in other people. Autistic people often stim to self sooth when stressed or anxious or to express frustration. Stims can include biting fingernails, hair twirling and drumming fingers. However in autistic people it could be rocking back and forth, snapping fingers, rubbing a particular object, chewing something or rubbing the skin. Rotating objects such as fidget spinners are also used as a form of stimming.

(https://www.healthline.com/health/autism/stimming#behaviors)

Self Injuries Behaviour

Self-injurious behaviour is a reflection of emotional distress and is usually an indication that someone is struggling to cope with overwhelming feelings. Some autistic people have stims that can be self-injuries behaviour such as head-butting, biting themselves, excessive scratching of the skin or punching themselves. Whilst autistic people should be free to stim, when a stim is self-injurious then it may need to be controlled in some way to prevent more harm. This can be done by redirecting the stim into something safer or changing the environment to prevent the need for the behaviour.

(https://www.jedfoundation.org/non-suicidal-self-injurious-behavior/)

Selective Mutism

Selective Mutism is a failure to speak in certain settings persistently. This is most common in children who often can speak fine at home, but struggle when in school and sometimes in other environments outside of home. Some will participate in events non-verbally and others may struggle to take part at all. Selective Mutism is classed as a social anxiety disorder and not diagnosed as part of autism, but seen as a separate condition by itself. It is sometimes misdiagnosed as autism as some of the characteristics are very similar. With Selective Mutism it is more about anxiety in particular settings, where as in autistic people it can be more about not understanding the subtleties of social interaction.
Echolalia/ Scripting

Echolalia is when someone repeats phrases and sounds they have previously heard as a form of communication. People with Echolalia often struggle with communication and may repeat exactly what they just heard on a TV show or in films or even what someone else has said to them. When used as a way to communicate when struggling to express themselves this is known as functional echolalia. A phrase from an advert or film maybe used that fits a situation. However non-functional echolalia is when the sounds or words have no real meaning to the situation. This can be used almost like a stim with the sounds having a calming effect on them. Most toddlers do this to develop language skills, but over the age of three this is far less common. However a lot of autistic children carry on using echolalia for far longer and especially if they’re experiencing delayed speech development. It is often a good sign that a child will eventually develop fully functional speech even if it is delayed in coming.

(https://www.healthline.com/health/echolalia#differences)

(https://www.verywellhealth.com/why-does-my-child-with-autism-repeat-words-and-phrases-260144)

Masking

Masking or camouflaging is where autistic people learn, practice, and perform certain behaviours and suppress others in order to appear more neurotypical. An example of masking might be an autistic person practicing smiling or making eye contact at moments that are considered ‘socially acceptable’ by neurotypical people, even though it feels uncomfortable and can be exhausting for them. Sometimes masking is more complex, for example an autistic child studying, and then mimicking the behaviours of a neurotypical child their age; from how they dress, to their interests, jokes, and social behaviours. Masking can be helpful in certain situations, but to always be hiding your true self can wear you out and can lead to mental health issues. Masking is often used when autistic people feel excluded from society or at least a certain situation they find themselves in.

(https://www.tiimoapp.com/blog/masters-of-masking-autistic-men-who-camouflage/)

Alexithymia

Alexithymia is a difficulty recognising emotions either your own or other peoples. Some can find bodily sensations connected to emotions confusing and struggle to communicate how they feel. It is not a formally diagnosable condition, but often goes alongside mental health conditions such as PTSD and depression. It is most commonly associated with autism, and whilst many autistic people have alexithymia, it is a distinct personality trait that not every autistic person has.

(https://www.medicalnewstoday.com/articles/326451#autism)

Hyperverbal

Whilst the stereotype of autistic people is that we hardly talk, some of us are actually hyperverbal meaning we over talk to an almost obsessive level. Often it is fuelled by social discomfort, a nervous trait used to try to disguise being uncomfortable. In my case, I have an overwhelming desire to say out loud a lot of what I am thinking. It is almost as if my thoughts do not seem valid if I do not say them out loud. Also I dislike long silences because then I have to listen to my own thoughts and with OCD and autism they can be sometimes not all that helpful to listen to.
Speech Therapy

A lot of autistic people have language and communication issues, speech therapy can help with this. There are various techniques that can be used to help an autistic child with this. As well as working on speech itself, other methods of communication are often explored. These can include electronic talking devices, signing, typing or a picture board. Sometimes this can lead a child to talk later once they have more confidence in communicating. Speech therapy maybe accessed through school, through a referral from a medical professional or privately. Sometimes an autistic adult may also benefit from working with a speech therapist.

Elopement/ Wandering

Elopement is the urge to leave a safe place such as school or home without telling anyone. It mostly commonly happens in some autistic children, but while most grow out of it, a few carry on this behaviour into adulthood. Some children with autism may not have the same awareness of their own safety as other children their age might which makes this behaviour worrying. Some will just keep going and run across roads or walk into dangerous areas such as building sites. The two main reasons a child may do this is either to leave a situation they are uncomfortable in or to get to someone or something they want. Some also just enjoy the feeling or running.

(https://www.appliedbehavioranalysisedu.org/what-is-elopement/)

ABA- Applied Behaviour Analysis

Applied analysis (ABA) is a behavioural therapy which has the goal of changing observable measurable behaviour, usually by manipulating a situation or using reinforcement. ABA is a fairly loose term these days to describe a lot of autism therapy and some of it is better than others. However most ABA is designed to get autistic people to be the same as their peers. The idea is often to get the autistic person to change rather than to accommodate them. This can result in autistic people doing things that make them uncomfortable or even hurt them in an effort to appear ‘normal’. A lot of autistic people are now speaking out against ABA as harmful as it can cause an autistic person to feel they are broken and that society rejects their true self.

(https://autisticuk.org/does-aba-harm-autistic-people/)

Advocate/ Advocacy

An advocate represents some ones views and rights. They make sure that a person is able to have their say and to access the services they need. Some autistic people struggle to communicate in certain situations or get confused easily by a situation they are not familiar with. An advocate is often a parent or family member, but could also be a social worker, carer, support worker or anyone who the person trusts to speak on their behalf. An advocacy service can also help, when an organisation can provide an independent advocate for someone. This maybe someone with specialist knowledge for a particular situation such as applying for benefits or legal situations. Other times an advocate can be useful is during medical appointments, dealing with housing issues and in educational settings.

(www.autismeducationtrust.org.uk/home-law-money-get-the-facts/what-is-advocacy/)

Find me on Facebook under Artificallyhip

Update

I am currently working on another blog post, but since that is taking me longer than ususal I thought I would drop my followers a message and let them know I have not stopped blogging and am still around.  I have been quite busy what with Christmas, my volunteer jobs and working on my various projects which has ment I have become behind with my blog posts, for which I apologise.  

Meanwhile my blog now has its own Facebook page.  I post things I come across that seem relevent to the things I blog about most.  I post links I come across during blog research that I think my followers may find intresting, Facebook posts and memes that put across points I believe better than or at least as good as I could say them.  If you have Facebook do give my page a follow under Artificallyhip (all one word).  If you do not have Facebook don’t worry I will be publishing another post here soon.

Lockdown in a small town

​When I first heard about lockdown happening in other countries on the news I obviously hopped it would never come to that here.  The idea made me slightly anxious and I tried not to think about it much.  However when lockdown was announced here I was not surprised and knew there was nothing I could do about it.  Like everyone else I had to learn to cope with the situation and deal with it as it unfolded.  To my relief I was not told I needed to shield by my doctor.  I think it would possibly have been too much for me living in a flat with no garden on my own.  I feel for those who have been shielding with no outside space at all.

I pretty quickly established a new routine for myself.  Being autistic routine helps me, especially in difficult situations.  I decided to go out every other day for exercise and shopping.  Since I do not drive and public transport was advised against, I could only shop within walking distance of my flat, so no large supermarkets.  Luckily most places in my small town are within walking distance, even for me with my chronic pain issues, except on my absolutely worst days.  I found it too physically and mentally draining walking everywhere, remembering to socially distance from others and trying to touch as little as possible to go out daily.  Every other day gave me enough exercise and mental stimulation to cope.  I soon discovered my favourite bakery was still open, so sometimes went to them for lunch and then I could sit in the park or by the sea to eat and watch the world around me.  Mostly in lockdown here that was birdlife. 

I live in a town well known for its waterfowl, both on the river and in an enclosure with some non-native species.  I have always enjoyed nature, especially waterfowl, but during this time I really got into watching the birds in town.  I have started to learn some more of the specious we have and have observed the differing behaviours of the birds.  I find watching them quite therapeutic, it can be relaxing and help me to feel a little more cheerful.  I even joined Chris Packham’s Self Isolating Bird Group on Facebook to learn more about birds and other wildlife.

Spring is a good time to keep going out and visit the same places regularly with the trees and flowers blossoming and the birds at their most active.  I have watched a pair of swans raise cygnets and a goose family with goslings.  I saw how they young gradually develop and change over time.  Lockdown would have been a lot harder in winter, being able to go out less often and nature being less active.  On a good day pain wise I would make my walk to or from town a little longer, exploring my local area.  I am lucky to live near parks, countryside and the coast.  I can think of a lot worse places to be stuck in lockdown.

Although I was on my own and did miss company.  I missed visiting my parents which I usually do quite frequently and got a bit frustrated with being on my own.  However where I live has a great community of people who have always been supportive and helpful and during this time really stepped-up for those who needed it.  Several local charities got together at the start of lockdown and formed a support network to organise things.  People knew I was on my own and a friend referred my name to them.  It started off with a delivery a couple of days before Easter of a chocolate egg and colouring book.  It helped me to feel less alone during a bank holiday weekend I would normally spend with my parents.  Then a few days later I got fish and chips from a local restaurant who donated a lot of meals through the scheme.  After that I started to get a meal delivered every week from the local community centre.  They cooked freshly prepared meals; usually a roast dinner and some sort of crumble for dessert and all I had to do was reheat it.  At first I felt slightly guilty that I was not stuck at home shielding and could get out for supplies.  However it gave me something to look forward to every week and being on my own I was not going to cook a roast dinner for one, so it was lovely to have one delivered, as I could not go out and eat anywhere else.  Plus I felt I was sort of earning my meals a bit by keeping up with some of my volunteer work.

My weekly volunteer afternoon at the local community craft shop stopped for obvious reasons, but my online volunteering carried on.  I help a local charity to run their Facebook page.  They are one of the charities that made up the support network for lockdown, so I was promoting their role in that and made sure relevant information was put on our page.  I put a call out for volunteers and made sure it was clear how to get support if needed.  I also shared some of the information to other relevant Facebook pages and groups.  It helped me to know I was doing my bit, although very small, it felt better than doing nothing.

I already used Facebook to stay in touch with people and during lockdown I used it even more as a way to feel less isolated.  It is good being able to see how friends are and share things with them.  In more normal times I often attend Karaoke at a local pub.  A couple of the regulars formed an isolation karaoke group.  We would film ourselves singing along to songs and upload the videos to the group.  Although not quite the same as a night out in my local, it was quite fun filming myself, trying to make more of a performance out of it and watching others have a go.  I also got a few of my friends to join in who live in other towns which was a way to enjoy something together whilst we could not meet up in person.  Music often helps me when I feel lonely or am struggling mentally and during this time it was especially helpful.

I started to take photos on my trips to town to document things.  I shared a lot of my photos on Facebook and Instergram.  I enjoy sharing the things that give me pleasure with others.  I think my photography skills have slightly improved now, although I am just using my phone.  

Keeping in touch with family has helped a great deal.  I do this using WhatsApp, Email and Facebook.  My mum and I made an arrangement to talk every day for at least few minuets on the phone.  It helped having someone to talk with when alone most of the time.  It was also reassuring to know my parents were OK.

Once we were allowed to travel further and take unlimited exercise my mum came over for a few socially distanced walks.  As I do not drive, I was still unable to get out of my small town, but my mum could drive to me.  Although we could not hug which was somewhat strange, it was very nice to have some company.  Since then single person households have been allowed to merge with another household and I have been able to visit my parents again and even stay over which has been lovely.

I am pleased with how I have copped with lockdown.  I did have a minor wobbly when my kitchen hot water tap broke within days of lockdown starting and I spent a few hours rather upset, but I calmed down and dealt with the issue fairly quickly.  I now have a couple of facemasks and carry hand gel in my bag whenever I go out, so feel like I am prepared for the next phase of this.  It was not always easy spending so much time alone, especially as I tend to over think things and my OCD can get worse, but making sure I got out regularly helped.  There were times I felt fed up, frustrated and lonely, but I am sure that was the case for many people and I still managed better than I thought I would.

I would like to thank those who have helped me during lockdown and made it a lot easier than it might have been otherwise.  Friends, family, the local community and volunteers who made sure I was alright.  I know that whatever happens next with this I have a great support network around me to help me deal with this.