TW: Trigger Warnings discussed

In the last few years there has been a large increase in the use of trigger warnings or content warnings.  Used at the start of social media content, it has spread to blogs, articles and all kinds of online content.  The idea is to warn people that the following content is potentially upsetting or “triggering” to people with PTSD or those who have experienced trauma.  It gives an idea of the topic about to be discussed.  Somethings probably should have a trigger warning, particularly graphic content with photos and detailed descriptions of violence.  However, I now see trigger warnings for topics that I really think do not need one.  Topics such as food, homelessness and general talk about school.  Some of the topics given warnings need to be talked about more, not given warnings as if they should only be discussed with caution.  It makes some topics seem taboo or something to be ashamed of.  It can add to stigma on a subject such as homelessness and mental health issues.  Support groups on social media do need to mindful of upsetting people, but it is not helpful to make topics some would benefit from discussing seem difficult or harmful.

I think some people misuse the word trigger and the word warning. What exactly does it trigger?  Something triggering causes “a strong emotional reaction of fear or worry because someone is made to remember something bad that has happened in the past” according to the definition used in Cambridge Dictionary (https;//dictionary.cambrdge.org).  A strong emotional reaction to me suggests to me more than just feeling slightly unconfutable, which I am pretty sure is all some mean by triggering.  If it just makes you uncomfortable scroll past it or better yet join in and try to figure out why it makes you feel that way.

Jeannie Suk Gersen wrote in her 2021 article ‘What If Trigger Warnings Don’t Work?’ in the New Yorker in refencing recent studies “they find that trigger warnings do not seem to lessen negative reactions to disturbing material”.  She references a large study done recently saying “If those suffering from P.T.S.D. were responding to trigger warnings by opting out of reading or discussing the flagged content, then, that would be concerning from a mental-health point of view, because the clinical consensus is that avoiding triggers worsens P.T.S.D”.  Most experts seem to agree “The key is to build resilience”.  I agree, otherwise what happens if a trigger becomes unavoidable? (https://www.newyorker.com/news/our-columnists/what-if-trigger-warnings-dont-work)

Now it seems trigger warnings are starting to be used offline as well.  When I looked up trigger warnings on Facebook as part of my research I found out that some books now come with warnings about possible harmful content.  I do not understand this as surely the blurb on the back of the book should tell you what it is about. 

I also learnt from a general web search that some university lecturers now use trigger warnings before a lecture.  So, the topic is not going to be pleasant, but surely you should not skip a lecture due to an unconfutable topic.  It is part of the course, possibly a core topic for a future carer.  For example, a law professor said some students thought trigger warnings on subjects such as divorce and segregation should be applied, but she refuses to use them as she feels it is a student’s responsibility to apply for disability accommodations under PTSD if necessary, not just skip whole topics on the syllabus.

Trigger warnings are well meaning, but often unhelpful.  Several studies show they are not useful to most people and potentially harmful to some.      

Science is the enemy of autistic people?

I am becoming increasingly worried and annoyed by a seemingly growing anti-scientific research crowd in the autistic communinty.  

Firstly there is the nothing about us without us argument.  According to some, all research should be led by autistic people.  Basiclly they say that non-autistic people could not understand or care engouth about autistic people to do the research for any reason that is not malevolant.  Some take it even further saying not only should the research be led by an autistic person, but only autistic people should be involved at all.  I think it is actually best to have both autistic and non-autistic scientists involved, to prevent bias.  An outsiders input is needed to have fair research, in order to see the wider prosepctive and how other things maybe influcing the results.  It can be easier sometimes for people who do not have autistim to see clearly what is going on and to not get things muddled up with their own subconcious isuses on the subject.  There are good reasons to have autistic scientistis involved as well, but not solely autistic ones. (A good article on outsider-insider research can be found at The Space Between: On Being an Insider-Outsider in Qualitative Research).  

Non-autistic people who choose to study autism have their reasons, often becuase they are realted to someone autistic like a sibling or they have an autistic person in their life they are close to.  Therefore most do not have malevolent intions, but care very much about autistic people.

Then their is the argument that all research into genetics and the brain functioning of autistic people must be for the purposes of eugenics.  Some say the only reason anyone would want to find the genetic link into autsim is to eradicate it.  A recent study into the genetics of autism was pused due to how controversial it became amoung a lot of autistic communities.  The main fears seemed to be around the collection of DNA samples.  I am not saying I agree or disagree with the study becuase I do not know engouth about it and it is quite complex, but I will say some of the arguments I have seen against it seem a little knee jerk in reaction.  Nowhere does the study mention wanting to cure autistic people or erridacate us.  

I also come across ‘I don’t like what this study found out so it must be wrong’ people.  They try to counter the study with other research, usually badly done non-scientific research.  Often their argument hinges on surveys done in social media groups who are bias and do not allow people to join the group who disagree with their point of view anyway.  Their arguments do not usually come from scientific papers or proper researchers so it is hard to take them seriously.  Sure, I do not always like the results of some studies, but me not liking them does not make them wrong.  

A lot of the people who campaign against and oppose research are very high functioning autistic or not even offically diagnosed, so they may struggle to see why research is needed.  They often fail to take into account how diffrent things are for lower functioning people or for those with less suppor.  If we can find out how autistic brains work we can understnad how to help autistic people better with the right therapies and support ti improve their lives.

I for one would like to be able to remove certain traits of my autistim.  I do not wish to cure it, but it would make my life a lot easier if I could supress certain traits I have little to no control over.  Studies trying to find medications to make lives better are not a bad thing.

I would like more autistic people to stand up for research and science., insteerad of mainly hearing the voices of those opposed to it.  Just becuase objectors often shout the loudest it does not mean all or even most autistic people are against it.  I have found other autistic people who actually want more research and do not seem to mind if it is autistic led or not. I would like people to make up their own mind about studies rather than jumping on the anti research bandwaggon becuase the group they follow on social media encoruages it.  

Hipaversarry reflections

Earlier this month was the eleven year anniversary of my hip replacement.  It got me thinking about my life since I had it done.  I have written several posts on my chronic pain and the negative side of things, but decided this time to focus on some positive aspects of my health and how my hip replacement has benefited me.

Before my surgery I used walking aids on and off most of my life.  I spent some periods not using any, but large periods where I used a walking stick or crutches due to pain and a limp.  The limp affected my balance so a walking stick helped me feel more secure as well as helping to take the weight off my hip.  For some months leading up to my surgery I used crutches due to the pain in my hip becoming much worse again.  Since full recovery from surgery I no longer use any kind of walking aid.  It is easier to do things with free hands to carry stuff and a rucksack used to be somewhat awkward in shops at times.  Also I realise now that some of my posture issues came from having used aids for so long.  Now that I no longer use aids it is benefiting my posture as I can stand more upright without leaning.      

Perthes Disease left me with a leg length difference of one and half centimetres due to the joint and stem being undersized.  This gave me a permanent limp, which led to lower back pain and other posture issues.  Also it affected my balance, which made certain movements harder and contributed to my leg weakness.  Now I only occasionally limp when over tired or when experiencing a particularly bad chronic pain flare-up.  A leg length difference is common amongst patients who had Perthes Disease, and although you can have specific leg lengthening surgery, it is a lot easier to get it corrected with a hip replacement.  

I am now on a lot less pain medication than I was before.  I still take over the counter medications more often than some people do, but not every single day.  I was on prescription strength co-codamol and ibuprofen for many years and it was one of the reasons my surgeon said I should have my hip replacement.  It showed I was obviously suffering a lot of pain and he did not think it was safe to keep taking that level of pain medication for many more years to come.  When I developed my choric pain issues some years after surgery at first I was on prescription pain killers for it, but I have managed to come off them again now I have had help from pain specialists.  The actual hip joint never causes me pain now, but occasionally the hip muscles do get sore enough for ibuprofen to be helpful.  This is often if I have done a lot of walking or exercise in some way, but it has to be far more than it used to be.  When I do take pain killers now it is often for my chronic posture pain instead of anything hip related.  

My posture and strength have gradually been improving.  When I had a limp and used crutches it was much harder to work on my posture and strength, to the point it sometimes did not seem worth bothering to try to improve it as it did not seem to have a lasting affect.  It seems much more worthwhile now to work on my posture exercises and strength building because I can actually put the effort to good use.  I am fitter now in my thirties than I was ever before in my life.  I can now stand longer and walk significantly further than I could before.  I used to find I was in pain after walking just a short distance, but now I can walk a lot longer before the pain sets in.  This has helped my independence and given me more freedom to do things I used to worry would be too much for my hip.  I am enjoying being outdoors more in part because I feel fitter and can walk further.

Other improvements have been in little things that make life generally a bit easier.  For example I can now get up easier from the floor.  Instead of having to roll over and make a somewhat more complicated and awkward manoeuvre, I can get up from a sitting position in one swift move.  I can squat more easily to reach stuff lower down or bend to the floor to pick something up without wondering if my hip will click and then hurt afterwards. 

My chronic pain issues do make some of these things harder on bad days, but my bad days are less frequent than they used to be.  Working on my posture, muscle strength and general fitness has helped to reduce my pain flare ups, making them less frequent and not always as intense.  I was determined not to let my hip replacement go to waste.  For me surgery was the first stage in a longer process to get fit and healthier.  It has not always been straightforward or easy, but my hip replacement was definitely worth having. 

Burn out

​Do you ever wake up feeling like your brain has been fried?  I do, fairly frequently.  I feel totally drained of energy, lethargic and unable to function properly.  I usually have a low mood with it.  When I wake up like this I have less tolerance for other people.  My OCD can be worse and I often feel more anxious.  My sensory processing skills can become slightly worse, meaning everyday tasks are slower and more effort.  Basically I become more obviously autistic and mentally unwell, or at least feel it.

On those days I do not like facing the world; it is too hard to deal with other people.  I am more easily annoyed and can be quick to anger on my worst days.  So I stay home if I can as I am too tired to try.  It is better for me and others if I recover at home, otherwise I may well have a meltdown at some point.  

Depression can kick in if I am not careful.  I tend to over think things negatively when burnt out.  I try to distract myself from these thoughts with television and various hobbies such as crafting and writing.  

A lack of sleep can contribute to feeling burnt out and low.  I struggle to fall asleep some nights.  Sometimes it takes an hour or more to fall asleep, although once asleep I usually manage to stay asleep.  Simply overdoing it the day before can be a factor. Lots of sleep helps with this, but if I do a lot in one day, the next fatigue can still take over.  I get both physically and mentally exhausted.  My chronic pain tends to flare up when I have done a lot and when tired, which in turn makes me feel mentally worse.  I can also feel over stimulated if I have done a lot, meaning I struggle to relax and fall asleep even more than usual.  Then when I eventually do get to sleep I can find it hard to get up the next day and often do not wake up till about lunchtime.

If my anxiety is worse it can make any Raynauds flare I may have worse.  Then I get more anxious about the Raynauds so it becomes harder to function properly.  Anxiety is also tiring adding to my exhaustion.

I often call days like this a mental health day or rest day.  A lot of autistic people call it burn out.  However many say their burn out lasts for several days or even week.  I tend to get short term burn out that lasts about a day.  Sometimes it can be even shorter, feeling a lot better by evening.  After a full day at home I then need to get out of the flat or I can end up feeling worse.  I need that rest time alone, but too much does me no good either.  I need a change of scenery and to interact with other people, or I can get lonely and bored.  Also I need to move more, exercise, even just walking around town, helps both physically and mentally.  There have been periods I need more frequent rest days, when I have better days, but need to rest every two or three days.  This can go one for several weeks, but it is not usually this bad.  It tends to happen when I am depressed or my chronic pain is flaring up more.  Sometimes burn out and depression can be hard to tell apart and can trigger each other, making it a bit of a vicious circle.

I do not like the fact I have so many days like this.  It means I can be unreliable, although I try to not over do it the day before I have made plans to be somewhere so I have more chance of making it.  It makes getting a paying job tricky.  I volunteer, and try not to let them down, but if I wake up feeling bad, I know I can call in sick and not have to worry about it too much.  

The Autistic Community Dose Not Speak For All Autistic People

​I have previously written about autism groups on social media going in the wrong direction.  I realised that I had latched onto some of the things a lot of these groups go on about and had become swept up in their passion, but when I actually thought about these things more carefully, I did not agree with everything they were posting about.  It is easy when newly diagnosed to think you have found a community online that at last understands you and you can talk about your struggles and support each other.  However it soon became clear some of these communities do not support each other unless you agree with their view point on everything.  I ended up finding some different groups and pages after someone sent me a message about a group they were in that I might like because they had seen some of my comments.  They led me to a community that actually allows autistic people to disagree with one another without getting really angry or upset about it.  These groups actually question some of the things a lot of what the so called autism community online go on about.  These groups are run by people who do not think they speak for the entire autistic community and that we all think the same way they do. 

These are some of the things I disagree with that many online autism groups go on about.  However as I cannot speak for every autistic person, these are my opinions and you are free to disagree with me.

Self diagnosed autistic

You cannot diagnose yourself as autistic.  I like the term self suspecting autistic because you can highly suspect you are autistic, but you can not be certain without expert diagnosis.  There is a substantial sized online community who call themselves self diagnosed.  They say that official diagnosis is a privilege and I agree that getting a diagnosis can be very hard, but some clearly have not even tried.  It is especially important to get a diagnosis if you are going to go online as an autism advocate.  Too many self diagnosed are now on social media claiming to speak for autistic people, when they may not even be autistic.  There are mental health issues that have some traits in common with autism such as bipolar, schizophrenia and borderline personality disorder.  One of the reasons I got an official diagnosis was to make sure it was not something else that could be treated with medication and specialist therapy.  I did not start telling people I was autistic and writing about it until I was certain.  Of course it is fine to join social media groups and do research on autism if you suspect you have it because it helps you to work out if a diagnosis is worth perusing, but to diagnosis yourself is not a good idea. 

Autism as an identity or personality trait

Autism is part of my identity, but only a part of it.  I see myself as made up of many influences from throughout my life.  Some people refer to being autistic as if it is their entire identity, instead of just one influence on it.  Seeing yourself as only autistic is limiting and keeps you from developing more as a person.  Some also talk like it is a personality trait and whilst it does affect a persons personality up to a point; it really is not a trait as such.  

Autism as a disability

The same people who see autism as an identity often also state it is not a disability.  Some say it is a social disability because society does not except us as we are and that if they did it would not be a disability at all.  Whilst I agree that society could often do more to help and accept us, I strongly disagree that it is not a disability.  I have some traits that have nothing to do with the rest of society and however accepted they were would still be a problem for me.  Such as my over thinking things till I make myself anxious.  It does disable me because it prevents me from doing certain things I might otherwise do, it makes it harder for me to fit in with other people sometimes, can cause me very emotional meltdowns that are unpleasant to experience and are mentally draining, causing me fatigue.  I get a disability benefit payment in part due to my autism, so yes it is a disability.

Autistic Spectrum Disorder

As well as a dislike for the word disability, some want the word disorder to be dropped from the name.  They say it is a negative word that makes us sound like we have some kind of problem.  Well I feel like I do have a negative problem.  It does disorder my brain and if it did not it would not be diagnosable.  I usually refer to it as autism, but I do not mind it being called autism spectrum disorder or ASD either.

Person first versus identity first language  

Some autistic people hate the use of person first language as in person with autism and not only prefer identity first, autistic person, but actually get offended by person first.  They say it denies us our autistic identity, but as I have already said I do not see autism as my entire identity and actually do not care which one people use.  It does not come across as disrespectful to me and it is not going to get me more support or understanding either way.  Some will reject entire articles and videos due to the use of person first, good ones making excellent points as well.  I find this frustrating because it dose not matter and should not really be an issue at all.

Autism logos

It surprised me when I first joined groups about autism how much this issue divided and upset people.  A lot of autistic people hate the puzzle piece logo that is a common symbol for autism and is still used by a lot of people.  They say it represents us as puzzling and not fitting in.  The current trend is for a multicoloured infinity symbol.  Firstly I think the puzzle piece was more about finding out how we do fit in and understanding the puzzle that is us.  Secondly unless you are an autism charity or organisation that works with autistic people why does it matter?  I have never found a need for a symbol for being autistic.  Some like to use it as a bumper sticker or on a t-shirt to represent themselves as autistic or having an autistic child, but I always found it a bit silly. When people use these things it just feels like they are trying to get attention and showing off as in look at me, look, I am autistic therefore I matter or as an excuse for bad behaviour.  If you want a symbol that is fine, but the argument over the puzzle piece logo is tedious and pointless.

Autistic masking

Autistic masking is defined as the suppression of parts of your identity in order to avoid negative judgements or blend-in in non-autistic spaces. (www.scottishautism.org/share-summer-2021/autistic-masking-what-do-we-need-know).  This can be conscious or unconsciously done.  Some autistic people see masking as a bad thing we should never have to do as we are hiding who we are.  I agree that masking all the time would be bad for anyone; people all need a space they can feel free to be fully themselves.  However it annoys me when some tell others all masking is a bad thing.  Masking sometimes is not only useful, but in some situations can save us from worse problems.  I believe masking is not unique to autistic people and that most people do it, although autistic people often do it far more.  I suspect most people do it to a degree at work and at appointments such as the job centre for example.  Telling other autistic people they should never mask is unrealistic and not helpful.

Evolution

Some say autism is the next step in human evolution.  I find this ridiculous because I cannot see how having social skills problems and developmental delay can be helpful to us.  Humans need to be good at a lot of social based things that many autistic people struggle with to carry on as a species.  Too many of us would die without non autistic people around to help us.  

Scientific research

I think more research into autism and its causes is important if we want help and support because it could lead to better therapies and more options for us.  Sadly though there is a kick back against such research from some autistic people.  They say that scientists want to find a way to cure us and remove autism from the world, especially when they do genetics research. I do not believe this; scientists usually want to help people.  Some say research is best when done only by autistic people.  I am not sure about this as there could be an element of bias and no outside prospective.  Even when it is done by autistic scientists they usually find a problem with it anyway.  A few even actively campaign against scientific research and publicly reject studies.  I hope scientists ignore this minority because a lot of us do want to understand ourselves better and would love more medical help for our most negative traits.

Autistic people only 

There are some who think only other autistic people should be writing about and giving out advice about autism because only autistic people can be accurate about it.  I think we need both autistic and non autistic people to be doing this so we get different prospective on things.  Sometimes other people can see things about ourselves we cannot.  Autistic people can only write about what autism is like for them.  I cannot write what it is like to be autistic as a non verbal, severally learning disabled autistic, but a parent who has cared for  years for someone like this might be able to at least a bit and a specialist therapist or doctor probably could far better than me despite not actually being autistic themselves. 

Parents in autism groups

Parents who are not autistic, but have autistic children often join autism groups to gain a better understanding of their child and how to help them.  However parents sometimes do not get a good reception in these groups.  The fact the parents came and asked autistic people for advice should be seen as good, but too many try to silence them and make out that parents are just making excuses to get away with treating us badly.  A parent can be extremely polite and understanding, but as soon as they say one thing the autism community disagrees with they get bombarded with hate.  Parents who make the effort to join these groups and ask questions are usually good parents and just want to do what is best for their child.  However the advice may not always be practical for their situation.  Yet dare to even suggest that and a parent can find they are banned from a group for supposedly not listening to actually autistic people.  If this carries on we could see parents not coming to autistic people for advice at all and then we end up feeling ignored.

Us and them

There a lot of posts that make out it is autistic people versus non autistic people as if they are the enemy.  A lot of autistic people are treated badly by non autistic people, from misunderstandings through to serious abuse.  However the assumption that everyone is against us and will treat us badly is wrong.  The majority of people are fine with us.  In fact it seems rather unkind to those family and friends who are not autistic, but love us and try to help us.  Autistic people can be just as bad anyway, complaining of things others do that they themselves do.  Such as when we are expected to change ourselves to fit in with others they say it is wrong, but then expect others to change to fit in with us, instead of compromising.  Some autistic people could end up very lonely or without the support they need because they are just too negative about the people around them. 
Learning to love being autistic

It is not internalised ableism to dislike being autistic.  Some say I need to learn to love being autistic and I am being ableist against myself if I dislike being autistic.  As I do not see autism as my entire identity I do not hate everything about myself as some claim I must.  I hate the parts of me that make my life and those around me I care about lives harder.  Some days I feel more neutral towards being autistic, as in it is what it is, but some days I hate being autistic.  If I have had a large meltdown and yelled at people or have had a difficult day I am allowed to hate the reason behind that.  

The so called autistic community need to stop telling other autistic people how they should, or even must feel about things relating to their own autism and how to be as a person.  

There are good support groups out there online, but pick the groups you choose to follow carefully and remember to think for yourself and not just agree with everything they say blindly.

If you would like more content you can find me on Facebook under Artificallyhip

2021 That Was The Year That Was

Having reached the end of 2021, I decided to review my year. It felt like I had not done or achieved much, but I knew I had not done nothing all year. So what did happen for me in the last year?

I think the biggest thing for me in the last year was changing my medication after twenty-three years on the same pills. My mental health had been gradually getting worse again and in the end I saw my doctor about it. We both agreed my medication was clearly not helping me, so time to try something else. Sticking with the SSRI group made sense as they are one of the most helpful for depression and anxiety and it is easier to switch medication within the same group, especially after so long on the same ones. My doctor came up with a plan to reduce my old medication very gradually and then switch to my new pills. My doctor warned me things could get worse before they got better and she was right. For a few weeks when I started the new medication I felt quite low, anxious and got a tension headache off and on. We gradually upped the dose of the medication and it seemed to help. They have by no means era the depression and anxiety, but I do feel like I am less tense and am able to function somewhat better even on bad days mentally. After so long on my previous medication I was slightly anxious to change it, but my doctor has been having regular check-ups with me and I feel safe with her keeping an eye on me. Previous doctors have just left me on my old medication pretty much unchecked even when I brought up similar issues, so it is such a relief to finally have a doctor that listens to me and wants to try to help me. I feel a sort of sense of achievement that I was able to stick with it and reach this point with my medication.

The other main medical issue for me last year was having dental surgery. I had a wisdom tooth removed. It is a minor surgery, but being my first ever dental surgery it was a somewhat of a big deal to me. I had to have it done at the hospital as it was impacted on bone and needed some extra work to get it out. What made me nervous was that I had to be awake for it, but it was so well numbed and so quick that the surgery itself was fine. However the after effects once the numbing wore off were horrible. It was an extremely painful few days. I got dry socket, so the hole failed to clot properly and it became infected. I was put on antibiotics which never fail to make me feel sick and give me stomach issues no matter which kind I am given. The gum was inflamed for the best part of a week and it hurt the entire time. It was only about a week, but it has actually left me quite scared of ever needing another tooth extraction again.

Other medical issues last year included my chronic posture pain issues, which have improved a fair amount since I started doing daily physiotherapy for it and got generally fitter. However they still flare up fairly frequently to varying degrees, especially my lower back and hip muscle pain. Raynauards still continues to be a problem in cold weather and was especially bad for the first couple of months last year.

In August my hip replacement reached its ten year anniversary. So far the joint has been problem free and I am very glad I had it done. I have issues with the muscles around the joint being weak and sore at times, but the joint itself is fine. I am enjoying being able to walk further and stand for longer without worrying it will flare up what could sometimes be extremely painful arthritis. I was told the joint should give me fifth-teen years minimum, more likely twenty and some last even longer. Since I do not do any high risk activities like contact sport or go running regularly I hope it will give me a good few years yet.

One of the major factors of last year was of course Covid, which affected everyone. The main issue for me has been cancelled events and lockdowns. I understand the restrictions, but they are hard when you live alone. However unlike the first lockdown the last one allowed single person households to have one other household they could visit which helped me a lot as I could see my parents regularly. I am being careful to stay safe, wearing a mask a lot of the time in indoor public places, even during the period when masks were no longer mandatory in shops I still wore one. For the first few months of last year I was somewhat anxious as I had not yet been vaccinated. Being under forty and not considered particularly vulnerable I was one of the last people I knew to be vaccinated. However I managed to get my booster shot much quicker having had it done just before Christmas. So that is three vaccinations in one year, luckily I live very near my local vaccination centre.

Something that has helped give me purpose and keep going has been my volunteering. Even during lockdown I was still able to keep helping a local charity with their social media, adding something most days to their page and sharing support information to relevant groups. Then once non essential shops could reopen I returned to my weekly community craft shop sessions. Last year the shop got a new manager who made some slight changes which gave me something else to focus on in my year.

I am part of the local history group which kept going last year despite lockdowns and restrictions. Not only am I a member, I am also part of the committee. We had a series of talks online attended by a small but enthusiastic group of members. Plus a few committee meetings held online. It was good to keep this going as it gave me something else to focus on during some of the more boring parts of the year.

The most annoying part of my year was the number of things that needed repairing in my flat. Several things broke last autumn within weeks of each other. My television signal went and it took three different repair companies to fix it properly! It cost me a fair amount in the end, but worth it as I watch a lot of television. My shower curtain rail fell down twice and had to be reinforced. My bathroom ceiling needed re-plastering and painting, but being slightly asbestos my housing company had to send a specialist to sort it out. Then to top it all my washing machine broke down and needed replacing. The bathroom things were sorted for free by the housing company at least, but I had to organise my own repairs for the others. I have never had to do this before and I was somewhat nervous. I had to figure out who to call and then had to make phone calls that were not routine which I often find worrying. However I managed it and managed to keep doing it when the first two television people let me down. I am actually rather pleased with myself and it has given me more confidence should I need to do similar in the future.

So although no major changes for me last year, it had some good points and some less good points. I have at least made some progress in regards my mental health and medication. Have become slightly better at dealing with things when they go wrong and learnt as long as I have radio I can cope without television at least for a while.

I am Autistic

​Since joining social media groups and pages for autistic adults and other disability groups, I have noticed a marked difference in what people call their disabilities.  Autistic people especially have differences in what they call themselves.  I have no problem most of the time with what people refer to themselves as because a disability is personal, but it does annoy me when other people refer to me in ways I never would myself.

I am autistic

Some autistic people refer to themselves as autie or aspie, but I do not.  The terms to me seem like trying to make autism this cool thing we have, when it is not cool, it is just who I am.  Aspie is short for Aspergers, a term no longer used in diagnose in many countries now.  It feels to me like a way of saying I am Aspergers, but it could be worse I could be autistic.  I was diagnosed after Aspergers was dropped mostly as a diagnosis and told I was autistic so I do not see the need to differentiate between them.  I understand if someones diagnose was Aspergers and they are used to using it so still do, but I was not diagnosed that way.  What I really find annoying though is when nurotypical people use the terms autie or aspie, people who are not autistic themselves.  It comes across as condescending and quite often seems to be used by autism mum types.  Parents who make their childs autism all about them, basically look at me, I am in a cool club of parents of autie kids.  Both terms also can come across as avoiding saying someone is autistic, either about themselves or by others about them.  I have come to terms with being autistic so that is what I call myself.  I do not want other people to try to find a cool way of saying it or to make it out to be something it is not.  It also saves confusion most people have heard of autism, but not the other terms often used, I did not even know what they meant till I spent more time around other autistic people, mostly online.  For me keep it simple, I am autistic. 

I am Nureodivergent 

Nuerodivergent is a term for people whose brains function differently in one or more ways than is considered standard or typical, (verywellmind.com/what-is-nuerodivergence-and-what-it-means-to-be-nuerodivergent-5196627).  It encompasses all conditions that affect someones brain processes.  Like many autistic people I also have comorbid mental health conditions.  Calling myself nuerodivergent covers me as  autistic, someone with OCD, anxiety and depression.  They are conditions that often go together.  They can trigger one another and it can be hard to separate which trait is from which condition sometimes.  Nuerodivergent describes them all as one making me up as a whole person, which is more accurate really than separating them out.  

I am Disabled 

I have both mental and physical health issues that make me disabled, in both sense of the word.  The medical model describes disability as a consequence of a health condition, disease or caused by a trauma that can disrupt the functioning of a person in a physiological or cognitive way.  This model is a conceptualization of a disability as a condition a person has and focuses on the prevention, treatment or curing of the disabling condition.  The social model a persons activities are limited not by the impairment or condition, but by environment and barriers within society.  (disabilityinpublichealth.org).  Although all disability is a bit of both, autism is more the social model of disability and my physical issues more the medical model, although sometimes in the past the environment could have been more disabled friendly in certain situations to make me feel less disabled.  My mental health is mostly the medical model with my own brain being the problem, although occasionally I feel the attitude of people towards mental health issues such as OCD can be a barrier that disables me more.

I am disabled not differently abled.  I really dislike that term because a disability is literally disabling a lot of the time and trying to pretend otherwise is not helpful.  I agree with another blogger who writes it takes the disabled persons daily struggles that are caused by an ableist society and turns these experiences into something positive and uplifting, (www.betterup.com/n;og/diffrently-abled).  In other words denying our struggles and giving ableist people an excuse to not change their behaviour.  It was not disabled people who came up with the term differently abled, but a US Democratic National Committee, so it is literally a politically correct term made up by politicians.  

The term special needs is one I do not mind in certain context such as education as it can help you to get more support, not just with obvious disabilities, but also other things such as learning conditions.  However as a full grown adult no longer in a form of education I do not want to be referred to as special needs, because my needs are not special, they are just my needs and everyone has needs.

Another term I really do not like is when people call disablities a super-power, this is especially common with autism, but has been said about other disablities.  It again is a way to deny us support and to give makes me feel patronised.  It is often said to children with disablities, but even as a child I found the term odd as it always felt far from a super-power.  

I get to decide which words I use to describe my own disabilities, no one else.  I feel all disabled people should have this right.  I do not like when other people decide for us or when other disabled people decide that I also must refer to it the same way they do.   

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.