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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 

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

Disabled Friendly Businesses

Many businesses open to the public could do more to make themselves disabled friendly.  Some seem to think it is OK to ignore disabled customers needs totally and some have made a good start, but could do better.  The disabled know that not every business can make themselves totally disabled friendly, some are restricted by the building they are in or by the nature of the business they do, what we are asking for is businesses to make adjustments where they can.  Many shops, cafes, pubs and other publically accessed buildings are actually missing out on what could be added income by not even considering the needs of disabled customers.  These are some of my suggestions to make businesses more disabled friendly. 

Ramps and hand rails

This may seem an obvious one, but some business have not even gone as far as making it possible for some people to get past the barrier of steps.  Some businesses cannot add a ramp permanently as they are a listed building or it would stick out too far onto the pavement, but they could often provide a portable ramp that can be put in place when needed.  Even if a business has a portable ramp, often it needs making clearer that they have one available and how to get it put out.  A sign needs to be put in the window that they have a ramp and how to get the staffs attention that it is required.  It is no good just having to yell in the hope they hear you through the door and down the other end of the shop or in a busy bar.  The best solution I have come across is a bell you can ring so that someone will come out and help.  Also if a ramp cannot be used, at least have hand rails that are in good condition at the side of the steps.  I have seen broken hand rails more than once or ones that just stop suddenly before the steps have ended, which is annoying. 

Heavy or difficult doors

After the barrier that is the steps, next comes the door.  Really heavy doors can be a problem for wheelchair users, those with any kind of walking aid and those with wrist or arm issues.  Not only is this an issue for the disabled, but those with pushchairs or heavy shopping.  Some doors can be so hard to open you think the business is closed when it is not.  Doors need to be kept well maintained if they are prone to swelling in damp weather and need to not be too heavy or stiff.  A good door handle is vital when not using automatic doors. 

Floor surfaces

Even the surface of the floor can be an issue in some places.  The floor needs to be kept smooth so a wheelchair can move across it.  Door mats and rugs need to be stuck down firmly so that people who find walking tricky or have walking aids do not get caught up in them, they can be trip hazards in some cases. 

Floor space

Some places have very little floor space which can be tricky for those in wheelchairs or on crutches needing space to manoeuvre.  Shops should avoid having items directly on the floor if possible.  Aisles should not be too close together, people need room to get up and down them without having to back a wheelchair up.  Cafes, restaurants and pubs often have their tables too close together, leaving no room for wheelchair uses to pull up to a table or for some people with walking aids, a tight squeeze can be near on impossible.

Lighting

Lighting is a very important factor in any business.  Places with really low lighting are frustrating to those with less than perfect eye sight.  Sure they are trying to create mood lighting, but when you struggle to see what you are doing it is just annoying.  Costa Coffee is one of the worst examples of this I have come across; almost all of them are pretty dark.  Then again lighting that is too bright can be painful on the eyes and can cause headaches, especially to those with sensory issues.  Flickering bulbs can cause problems for those with sensory issues as well, it is important to change bulbs that flicker promptly. 

Seating

Seating in a café, restaurant or pub needs to be comfortable to sit on for an extended period of time.  Too many pubs rely on stools for seating.  Whilst most people can sit on them for short periods, I have noticed not many people seem to find them comfortable for long.  Sofas and bucket style chairs seem popular in cafes these days, whilst these are fine for some people; they are often too low for me.  For those with back issues, hip or knee problems, chairs and sofas that you sink into can be hard to get on and off.  Too many places that serve food do not have chairs compatible to the height of the tables, which means you either end up with food in laps or setting off any back issues someone may have.  A range of different seating options is the best solution, but at least choose chairs at a sensible height with proper backs to them. 

Background music

Background music should be just that, in the background.  Some places have the music so loud that you cannot think what you are doing.  Those with sensory or concentration issues can find loud music so intrusive that they will just walk out again. 

Signs and menus  

Anywhere that serves food and drink needs to keep menus clear and easy to understand.  Some menus are too busy with so many visuals they are confusing.  Remember dyslexics and others who struggle with reading may find it tricky to understand a complex menu, keep the layout simple.  The same goes for signs, keep them simple with a clear font.

Helping customers

In a café or pub staff should help customers that are clearly struggling to carry a tray of food or drinks.  I have had staff just watch me struggle and if I drop it, they only make more work for themselves having to clear up the mess.  On the other hand in shops I have had over helpful staff who keep asking if I need help when I have clearly said no.  Some autistic people struggle with social interaction and this could be very off putting for them, especially if they are already struggling to concentrate in a public setting.  Staff should only ask once if someone needs help and should also not make me feel watched the entire time like I am some potential shop lifter, this has put me off some shops totally.

At the till

At the till it can take some people longer to pack their bags than others.  I would like to not feel rushed by the cashier as if I am being slow and do it on purpose.  When I was on crutches this was even worse as it could take me a while to put the crutches to one side, pack my rucksack, put it on my back and then get the crutches back on, but a few cashiers used to roll their eyes at me.  Other customers could also be more patient with someone on crutches or any kind of walking aid as shopping with them is not easy.  Also some people take longer when they have cognitive issues or even issues that can impair dexterity in their hands such as arthritis. 

Toilets

I have said this in previous blogs as it is one of my pet hates, badly designed or misused disabled toilets.  If possible a business should have a separate disabled toilet, disabled people can take longer than others and this helps free up the other toilets.  A lot of places also assume all disabled people are in wheelchairs and therefore put the mirrors really low, or quite often do not put any mirrors in at all, as if disabled people cannot possibly care about how they look.  Most importantly of all businesses should remember the disabled toilet does not double up as the cleaning cupboard!  There needs to enough space left for turning room for a wheelchair, but often the toilet is so cluttered that there is simply no room.

I hope this will start more of a debate around accessibility and give bsuiness owners more of an idea of disabled customers needs. Also I hope disabled people feel justifed in standing up for their rights as customers and start asking some places for better acsess.

Disability Memes

One of my pet hates is disability memes.  They either make fun of a disability, patronise the disabled person, deny the disabled any personality, often they decide for us how we should feel about our own disability, or they just get the facts about that disability wrong.  These are some I have come across that annoy me.

See the ability, not the disability

Whilst I wish employers felt this way more often and sometimes other people too, my disability is part of who I am and people are bound to notice it after a while.  What I would rather people saw is the disability and my ability, that way recognising both what I can do and that I may need extra support in certain areas or some adjustments. 

Differently abled, not disabled

This one is often used in reference to autism and learning disabilities.  Denying our disabilities could result in denying us the support we may need.  When used by other people about us it is like they are saying we have decided for you that this is not a disability and therefore you can’t call yourself disabled, when actually it is up to us if we see it as a disability or not.  Personally I find my autism does disable me and am OK with calling it a disability, but not all autistics like to call it that.

OCD should be rearranged to CDO

This one really annoys me as it makes light of what can be a very crippling mental health disorder for some people.  It also totally misunderstands what OCD really is, I have never had the desire to rearrange acronyms to make them alphabetised as they would then make no sense, which I am sure the person posting the meme knows, but still not funny.  In fact there are several OCD memes out there which are pretty much a mick take of the disorder and make it harder for people to get help and get a diagnosis as they think it may not be taken seriously.

I am proud of my autism

Why would I be proud of something I did not strive to achieve?  This one makes very little sense to me.  I am proud some of the things I have done with my life, such as my degree, but I am not proud of having a neurological difference because it is just part of who I am like it or not.

Never ignore someone with a disability as you don’t realise how much they can inspire you

Disabled people are not here to inspire others; we are not ‘inspiration porn’.  The term inspiration porn was ‘coined in 2012 by disability rights activist Stella Young in an editorial in Australian Broadcasting Corporation’s webzine Ramp Up and further explored in her TEDx Talk. She rejected the idea that disabled people’s otherwise ordinary activities should be considered extraordinary solely because of disability,’ (https://en.wikipedia.org/wiki/Inspiration_porn)

Calling disabled people inspiring dehumanises them.  It is saying they have no personality of their own because it assumes we must all be nice people because no one would want to be inspired by someone not very nice.  However disabled people do of course have personalities, some of which you may not like.  It also puts a lot of pressure on disabled people to have to always manage by themselves and keep going when they really have reached their limit and need to admit something has defeated them, or they need help.

The only disability in life is your bad attitude

This goes with the last one in that it puts pressure on disabled people to think they have to manage everything and do it by themselves.  Disabled people are just trying to live their lives and learning to deal with their disabilities in the same way everyone else is trying to deal with their own issues and problems.  Also it puts a lot of pressure on people with mental health disability issues to suddenly rise up and become better almost over-night.  Yes attitude does play a role in what you can achieve in your life, but it is not the only thing that affects it.    

Children with autism are colourful and beautiful and like a rainbow they stand out

I stood out as a child, but for the wrong reasons.  All I wanted to do at times was fit in, not stand out.  Autistic people are no more or less beautiful than anyone else.  Stop calling disabled children rainbows, it is patronising.  These sorts of memes are nearly always aimed at the parents and relatives of disabled children to make them feel better and what they need to realise is their child is still a child and no amount of slushy rainbow talk will change anything.

I would like to ask you to stop sharing disability memes for disabilities that you do not have yourself.  Even if you are disabled if the meme refers to a different disability to your own then I would urge caution on sharing it.  Without intending to these memes can cause upset or annoyance for those with the disability.

Autism is Varied

Autistic people share certain difficulties, but being autistic will affect them in different ways, Autism is a spectrum

Put a group of autistics together and they are bound to get along, WRONG!  The thing with autism is that it is so varied we can end up clashing.  One autistics need could be another autistics meltdown trigger.  For example some autistics needs peace and quiet, but at certain times too much silence can be bad for me, giving my OCD thoughts and anxiety a chance to take over.  I used to be part of an autism support group on Facebook.  It was fine for a couple of months, but people started disagreeing on various topics, getting more and more heated in debate.  In the end it led to arguments and people getting upset, so I left the group.  If autistics struggle to get along with other autistics, how an earth do we expect to get along with non-autistic people?

Actually I sometimes find non-autistic people easier to get along with.  They can be more willing to except difference and change, more able to understand that people’s opinions may differ from their own, less easily upset and stuck in their own way of doing things.  An autistic person may obsessively tell me about a hobby or interest to the point I am almost at meltdown and have to find an escape from them.   I find some non-autistic people very hard to get along with, but no more so than some autistics.  Autistic people like everyone else have personalities so we will not all get along.

The National Autistic Society in the UK campaign for more autism friendly services and shops.  The trouble is what is more autism friendly for one autistic may not be for another.  I do wish other people understood autism better and were more excepting of our needs and differences, but I feel the term ‘autism friendly’ can be misleading.  It assumes that all autistic people need the same changes, which is simply not true.  I would rather people just accept us as a bit different and that we may not fit the social model of ‘normal’ all the time.

The fact that autism is so varied can be an issue.  Instead we need to look at it more as an umbrella term rather than as one specific thing.  It is several conditions that have common characteristics.  There is a need for books and guides on the subject of autism to not stereotype or it could be a case of ‘oh, but the book says…’.  I tend to find the books written by autistics themselves are often better than those written by so called experts on the subject. 

I recommend The Girl with the Curly Hair Project as a good guide to what autism is like for a lot of people, especially females with Asperger Syndrome.     https://thegirlwiththecurlyhair.co.uk/

AARGH!

Autistic Meltdowns

I suddenly start to yell at the people around me, getting increasingly loud.  I yell abuse, threats and swear.  I stamp my feet, bash the table and cry, sobbing loudly.  I look like a toddler having a tantrum, except that I am a full grown adult.

A tantrum is voluntary, used as a tool to manipulate and get your own way.  However I have no control at this point, there is no planned purpose or manipulation intended.  My emotions are at over load and crashing down like an avalanche.  I am having an autistic meltdown.

This describes my meltdowns at their worst, when I totally loose it.  Not all my meltdowns are at that level.  They vary in intensity and in how long they last.

What causes me to have a meltdown is not always easy to pinpoint.  It can be caused by a sudden change in plans or lack of knowing what the plans are.  If plans are made and I am expected to be part of those plans, but I am not informed in exact detail as to what those plans are in advance, it can cause me to get confused and upset.  Any kind of confusing situation can cause a meltdown if it continues being confusing for a significant length of time.  Frustrating situations such as people continuously not listening to me or things going wrong a lot can be a trigger.  Another trigger can be interrupting one of my OCD routines, when I am already somewhat stressed.  Fatigue can be a cause, when I am too tired to control myself any more.  Major disappointment has been a trigger in the past.  Sometimes a meltdown can be me having made such an effort to fit into a situation for hours that I eventually explode.  I will have kept back opinions, been polite to people who frustrate me and basically have been in a situation I find difficult for so long that in the end a meltdown is like a cathartic release.  Putting pressure on me to do something I have clearly already said no to is a big trigger and can cause me to feel like you do not respect me, no means no!

Often a meltdown may not be caused by one specific thing, but by a series of things that can build up over time.  It can take hours or days for the triggers to build up sometimes and one last thing can be the final straw.  I can sometimes work out why I had a meltdown afterwards, but often struggle to know at the time and sometimes never figure it out.  Asking me at the time why I am having a meltdown is not a good idea, often it just makes my meltdown worse, making me frustrated that I do not know why I am having it.

Sometimes I can feel myself getting increasingly annoyed and know I need to get away from the situation.  If I need to leave a room or walk away let me, it will be better for everyone.  However I can’t always feel it coming and it will happen like it or not. 

When I was younger I had more frequent meltdowns that often lasted longer than they do now.  I had them a lot as a teenager in school.  I think I was frustrated with life then, feeling trapped in a school that did not really meet my needs.  Being undiagnosed I was not getting the right support.     Also I am sure puberty played a part.

I still have meltdowns, but less often than I used to.  I feel maturity has helped a lot having had time for my hormones to settle down and time for me to get used to life as an adult.  I also feel my independence has helped me.  Since l got my own flat I feel more stable and able to manage my own life.  I am in charge of what do and when, making me less confused and frustrated.  I am also better at dealing with certain kinds of stressful situations.

When I do have a meltdown now I find I they do not last as long as they used to.  I can calm myself down more quickly and rationalise with myself somewhat about the situation.  Being angry at people who can do nothing to help is daft and will not get me anywhere.

Yoga breathing can help slightly to prevent a meltdown getting worse, but it depends on the exact situation.  It helps me to focus my mind on the breathing and think calmer thoughts. 

I hate that I still have meltdowns at all.  It makes me come across as immature and selfish.  It gives the wrong impression about me to other people, like I am just some angry, hate filled bitch.  Telling me to grow up or to stop being so over sensitive is unhelpful, if I could totally stop having meltdowns I would.

Friends & Friendship

I would not describe myself as popular and do not think I ever have been, but I have more friends now than I used to.  It took me a very long time to meet so many people I would call true friends.  People I know I can share with honestly and openly, who I trust will not judge me and at least try to understand me.  I know that when it comes to friendship it is quality over quantity, better to have a few loyal friends, than lots of people who are only there in the good times, and let you down when things are not going so well.

I remember struggling to make friends when younger.  As a child I had phases of having a few friends and phases of not really having any at all.  I remember not fitting in very well with others at school and spending a lot of time on my own during break.  At primary school I did not always mind having so few friends as I enjoyed my own company and could often amuse myself.  However by the time I went to secondary school I was feeling increasingly lonely.  I was bullied to the point I would often refuse to go to go to school.  I knew by this point that I was somewhat different to my peers.  At the age of twelve I was diagnosed as having Obsessive Compulsive Disorder, which went some way to explain my social life or lack of, but as a teenager I realised there was more to my issues than just OCD.  However I had no idea what I could do about it.  For a lot of my teens I had very few friends.  I did not really fit into any social groups.  At times it really upset me to not be invited to things and be left out of social events, but sometimes I minded less and I suppose I got sort of used to not having many friends.

During my first two college courses I did not make any friends.  I got on OK with some people, but could not say they were really friends.  When I started a performing arts course I got on somewhat better with people.  We had a common interest in theatre and performing.  Drama people are often the outsiders, the ones who did not get on so well in school and tend to be a bit different.  Also performers tend to get good at reading people and understanding them better having to work so closely together.  I did not get invited out much, but back then I did not drink alcohol and I think some of my class knew I would not have enjoyed a drunken pub crawl or nightclubs much anyway.  Over my three years of performing arts at college I got slightly better at socialising between classes.  I did get invited to a couple of parties and had a twenty-first birthday party myself.

At twenty-three I went away to university.  I felt I fitted in and got on with people there a lot more than I had anywhere else.  By the time I left university I felt I had made some real friends.  I think partly it was having common interests, but also I was more mature and had learnt how to socialise a bit better.  I had started drinking by this point and enjoyed going to pubs and clubs more.  (Although I was not really a heavy drinker compared to a lot of students and did not go to night clubs very often.)

Since moving out of my parent’s house and living more independently I have made more friends and gained more of a social life.  It helps that I understand myself somewhat better now, having finally had a proper autism diagnoses and have taken time to learn more about my conditions.  I am less angry and confused about who I am, which helps how I come across to others.  I feel calmer and have less public meltdowns.  Although I still have the occasional outburst, they do not last as long and I get over them more quickly.  Also I have learnt the kind of people who I tend to get on better with and will make more suitable long term friends for me.  I have found that when it comes to making friends age and sex does not matter so much as understanding.  People who can accept my autism and OCD and do not judge me based on my conditions.

I have had one really good friend throughout the years that I have known for longer than anyone else, since I was in my early teens in fact.  I really appreciate this friendship because this person has been there for so long and always supported me even when things in my life were not going so well, and I had no other friends.  It showed me that I could make real friends if I made the effort and it was worth doing so.

images

Autism Posts On Social Media

When I was diagnosed as autistic a couple of years ago I started following a few autism charities and support pages on Facebook.  I find they often post some interesting articles, help me to understand my autism better and help me to explain to others what it can be like being me as an autistic person.  However there are times I get frustrated at some of the posts from these pages.

‘Top Ten Positive Autistic Traits’, ‘Terrific Traits of Autistic People’, ‘Positively Autistic’, Google positive autism and this is the kind of blog and Facebook post titles that come up.  These kinds of posts appear in my Facebook news feed from time to time and always manage to annoy me.  Sure, autism has some positive traits, but these are outweighed by the negative ones.  The fact that we even have autism charities tells you it is not such a great thing to have or we would not need the support.   A lot of the traits typically said to be positive, I have actually found to be negative in my life.

Positive Trait Negative Reality
Makes me honest, straight forward and unable to lie.  Some people say they like this about me. I am told that I can be too blunt at times.  Being overly honest can hurt others feelings, or make me appear rude.
Very good attention to detail, work more likely to be thorough and accurate. Too caught up with tiny details that may not matter over all and not always seeing the bigger picture.
More focused on a project, less easily distracted. Even when more important matters may come up, I could be too focused on something that is no longer relevant.  Risk of ignoring others to my loss whilst focused on a project.
More organised and better at planning. So organised that I worry or even panic sometimes if things do not go to plan or other people change things without warning.
Expertise in specialist interests. None of mine seem relevant to the job market. Have been told I can seem lecture like on some subjects that I am really into and bore people after a while.
 Exceptionally good awareness of myself. Including being aware of my faults and failings which can be depressing at times.

 

How am I supposed to be positive about my autism when I am called rude, selfish or an annoying know it all fairly regularly?  When you manage to annoy other people on such a regular basis without meaning to it can make you feel less than positive about it.

Some of the worst posts are those phrases you are supposed to share on your Facebook wall such as ‘My child has autism, what’s your kid’s super power?’ or ‘I bless all autistic children’.  Almost all of the phrases are about autistic children, it is as if once you are adult you are suddenly no longer autistic or it at least no longer matters.  A lot of the phrases make out how great it is to have autism and some almost make out we should celebrate it.  While it is not a tragedy, it is not something I am going to have a party for and get really excited to have.

imagesPosts like this do not even mean anything!

It would appear from some posts that I am not an individual, but some kind of clone.  It may seem petty, but the use of language matters when writing autism posts.  Too often posts are written using pronouns such as them, they, and all.  It makes it sound like all autistic people are exactly the same and that we have no individual personalities.  Often the worst examples of this can be found more in the comment sections of autism posts.  This gets annoying when you find out some of these people who comment are support workers, teachers or parents of autistic people who should know better.  ‘They are all so well meaning’ or ‘they are all so wonderful’, makes us all sound like we are too stupid to know any better, and that every time we say something less than helpful or nice we actually do not mean it that way.  Yes there are times I say the wrong thing and appear selfish or rude when I do not mean to, but there are times I am less than well meaning.  It makes it sound as though we can never do any intentional harm.  I do not like to think of myself as a nasty person, but I admit to times I have said or done things that make me less than wonderful, and I knew I was doing it.  Not all autistics are wonderful, loving or nice, nor are they all horrible, rude and annoying.  Autistic people have personalities that also affect behavior and attitudes, just like everyone else.  Some days I am in a bad mood and not so great to be around.  Sometimes this is my autism, sometimes it is just me having been really annoyed by something or someone, my hormones or lack of sleep.  I am not an all, they or them, I am me.

I think more posts on these pages should be written by autistic people themselves.  They can give hints and tips they have found useful to other autistic people and tell parents and those who work with autistic people what it can really be like for some of us who actually have it.  One of the best support groups on Facebook I have found is The Girl With the Curly Hair.  She is autistic and writes very well about what it can be like to have autism.  It is refreshing as an autistic female myself to have another autistic female who can communicate well instead of the usual male bad at communication stereotype.  Plus the comments on her posts tend to be from people who seem to understand what being autistic can really be like.

Try not to share those autism phrases that mean well, but actually can come across as slightly patronising a lot of the time.  If you should choose to comment on an autism post remember not to lump all autistic people in as one mass.  That aside there are some really good posts about autism out there and they can aid understanding, but try to remember not every post will apply to every autistic person, autistic people are individuals.

Faux pas and other social issues

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I often seem to say the wrong thing or too much.  Put my foot in it you might say.  Sometimes everyone does this, but I find myself doing this rather a lot.  Part of the reason could be my autism, but I am not always able to tell what is due to my autism and what is a mistake most people could make.

I am told I can be very blunt, meaning I simply say what I think without social niceties.  I do not see why I should not say things as they are; it seems pointless to pretend otherwise to me.  Although obviously even I can tell certain situations require subtlety.  I can often tell when others are using social niceties and most of the time I do not mind, but sometimes I would prefer a straight answer.  I think people can mistake my bluntness for deliberate rudeness which can be annoying.  I tend to get this from people who know me less well.

I am also told I talk way too much at times.  There are times I could of stopped talking about an issue a few sentences back and may have gotten away with not saying the wrong thing if I had stopped talking about it sooner.  However I can struggle to tell if I am over discussing a topic sometimes.  I may also bore people with my long rambles on an issue they are not so interested in.  I have this urge to get all my thoughts out on a topic to someone at times.  I feel like I may burst if I do not say it.  Part of it could be I over think a lot of things to the point my mind feels full and I simply have to unload.  A bit like some of my blog posts I suppose.  I do find writing about a topic helpful.

I find certain social situations harder than others to know what or how much I should say.  I find situations I have experienced less often harder.  Practise has helped me get better in a lot of situations.  I think I am getting better at chatting in pubs, cafes and at family dinners, although not always exactly getting it right.  I find certain people easier to chat with as I know what I can get away with saying with them.  Family members and friends I see more regularly are easier on the whole, but people I see less often and new folk can be harder.  I often end up being way too blunt for them or talking so much they get annoyed or walk away.

Social media is often easier for me.  I enjoy chatting online, but sarcastic comments can be lost on me, although I get the very obvious ones.  Without facial expression or voice tone sarcasm can be tricky for anyone.  I also find some people who do not know me can be offended by my comments.  Bluntness strikes again!  I try to make my comments not appear rude, but now and then some people just take them the wrong way.  In these situations I often stop responding to them as it is not worth an argument.  Although I have occasionally purposefully been rude back to show them that their comments are wrong or unhelpful or just me getting annoyed, then I step away from it.  I have found that turning off comment notifications can be helpful.

I try to remember to think before I speak in certain situations.  However I find this tricky when I get onto certain topics I am very passionate about or in a heated debate.  I guess that this could be common for a lot of people though when things get heated people say things in the moment.

Another thing that has been pointed out to me is that my voice can get monotonous, although I like to think my background in drama has helped make it less so over the years.  I certainly think my speech was less varied as a child, which must have become tedious to listen to after a while for some people.  I can become monotonous again now when rambling, but having been made aware I do this I often try to not allow it to happen too much.  In drama classes we learnt about inflection and emphasizing certain words which was useful for me.  I feel drama has a lot skills high functioning autistics could find helpful and taking a few classes would be beneficial for a lot of autistic people.

What I find annoying is when people stereotype how they think I will be in social situations.  Firstly I actually enjoy socialising which surprises some people who think autistics all enjoy being left alone on their own all the time.  Sure I need alone time, everyone does, but too much alone time makes me feel lonely.  Plus my OCD and other anxieties can get worse if I spend too long alone with my own thoughts.  Secondly I do go to pubs and drink alcohol.  (OK I spent nine months last year t-total, but that was not me avoiding alcohol for autistic reasons, that was a whole other thing you can read about in a previous post should you wish.)  I am not a heavy drinker and can go for weeks at a time not drinking, but I have been drunk before more than once and may well be drunk again.  There is often an assumption that autistics cannot stand booze and find pubs too noisy, which although often true, is not always the case.  I have heard that autistic people have no sense of humour.  Wrong!  I do take a lot of things more seriously than some people, maybe too seriously at times, but I certainly enjoy a laugh.  Not only do I like many sit-coms, comedy films and stand –up comedians, I can enjoy laughing in a social setting with friends.  I can see the funny side of drunken mishaps and can laugh when friends recount amusing stories.  As for the autistic people are introvert and quite thing and do not talk unless directly spoken to or even are totally mute, well this could not be further from the truth in my case.  As I wrote earlier I am more likely to over talk and say too much.  Also I will talk to people who have not directly spoken specifically to me, but more generally to everyone in a room.

Autism is not an excuse to be deliberately rude to someone and it is not an excuse to take over a conversation and have the most say about an issue, but it can mean someone may not know they are doing this.  Sometimes it helps if other people around them give them some understanding and do not just assume they are being rude.  It can help if people point out what they are doing, although with tact and quietly not in front of everyone, if an appropriate moment comes up to do so