Autism only applies to children

"It's Asperger's and Autism Awareness month! In honor of all children who struggle every day!!"

Every now and again I see similar things appear on my Facebook newsfeed from well-intentioned people trying to 'raise awareness' of the suffering that autistic children face. Inevitably with World Autism Awareness Week (27th March - 2nd April 2017) coming up, I expect to see more of those kinds of social media posts. 

There's a few things that irritate:

Firstly they claim to raise awareness and provide no education, no quick facts or anything that we can learn. If you want to raise awareness, actually provide some meaningful and useful content might be a starting point, yes?! When is Asperger's and Autism Awareness month anyway?!

This notion of universal daily struggling or suffering kinda grates on me. Actually some days as an autistic person I couldn't actually say I struggle. I've had issues all my life but I am not sure if it's just manageable (ish!) because this is all I have known or if in the grand scheme of things, I am generally okay? I avoid stuff that upsets me and that's my coping mechanism. I know certain social activities and career paths would upset me so I don't do it. Simple, right?!

Okay, I get sensory overload and yes it's unpleasant but it's not constantly upsetting me. I am one of the fortunate ones who can generally extract myself from situations before they get to the point of a meltdown. I realise too that not all autistic people can do that and perhaps I am on the end of the scale where I have fewer undesirable autism related aspects about myself than many others.

Autism doesn't impact on my mobility either so I think myself lucky that I can do lots of things for myself. 

When I think of suffering, I think of someone with chronic pain and challenges that impact their lives so greatly that a large chunk of it is utterly miserable. Maybe I am an ablest amongst the autistic demographic but I have never put myself in a category of where I feel I suffer daily. I won't apologise for that either. My lens is how I view the world and I can't pretend to fully know or understand everyone's view but I can try (despite supposedly autistic people being void of empathy - yeah, right!). Sure, life can be struggle at times but autistic people don't have a monopoly on that. 

The whole "in honour of" thing...

Are autistic people in need of celebrating or having our challenges, differences and similarities respected via a little Facebook post? We didn't pick to be like this. We didn't earn this cognitive style. It makes as much sense to me as celebrating people with blue eyes. 

WELL DONE all you lot with the eyes the colour of the sky. You worked so hard just being yourself. 

This is how we are and I think most of us, like the rest of the planet, generally get on with it the best we can?! 

It's all a bit patronising for me.

Finally.... 

There is some notion that within these copy and paste crap that autistic adults are off the radar. 

Do only autistic children count? Now you're 18, the Facebook concerned no longer bother about us. Or maybe they think we have a terminal disease called autism whereby we don't actually reach adulthood. Incidentally, I am exceeding all lifespan predictions being in my 30s... Or perhaps one of my autism super powers is cheating death by using complex mathematics?!

Hmmmm or maybe by the time one leaves childhood, we have magically grown out of our cognitive style and become fully signed up members of the "Normal Club"?! Here we have lost our sense of systemising, become extremely empathic and gained wonderful social skills to become an artful host within high society. 

Or more likely, we just get on with it. We perfect our coping mechanisms in time, we learn how to pretend we're okay, understand more about ourselves to avoid things in life that upset us and perhaps care a little less about what others think. It's not that we have cognitively changed in our essence but many intellectually higher functioning autistic people probably have adapted from where they were in early childhood.

So when I see such Facebook posts, don't be surprised if I remind the person about the existence of autistic adults. It's not to be pedantic (ok, yes a touch!) but because it's attitudes like that which reinforce the view that only those in education and young people are entitled to autism related support. This is because I often feel like the existence of autistic adults is denied unless they have comorbidities and require social care and institutionalisation. Us autistics who seem okay on the surface are often forgotten. Time and time again, I think back to my experiences of working in education and my life and seeing support in schools and colleges but it almost disappears overnight once one has left their educational institution.

So please, let's not make sweeping statements that do nothing to help anyone, spread generalisations and misinformation but also ignore a sizeable demographic with autism. I'm not sure we need your kind of sympathy...

Now, if you like, you can return to your fake news, click bait websites and videos of extremely daft people doing very daft things! 

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School reports: spotting the autism

I was going through some cupboards and found a folder of old school reports. Some were from primary school and some from secondary.
I decided it might be useful to see if there were any clues to indicate that I had autism. After all, I went on to have a diagnosis of Asperger's Syndrome in my mid-20s and it's something that would have been present throughout my childhood too.
I have copied out quotes from the reports.

Primary School

• She does not always listen to instructions very attentively and is apt to day-dream.
• Art work remains immature (!!) Poor motor control and finds drawing accurately, cutting out smoothly, etc., very difficult.
• PE - Finds all ball skills extremely difficult. I have dyspraxia.
• She has strong opinions and will voice them readily in discussion. She is not swayed by what anyone else thinks.
• She sometimes finds it difficult to concentrate on aural work. I do have sensory overload problems and too much information can make me shut down.
• It took time for her to settle into a new class routine as she initially seemed unhappy at new friendship groupings. I guess I was a bit resistant to change?
• She writes very imaginatively.
• She is very much an individualist and likes to fully understand each task before she works on it. This makes sense because I like to know everything about something.

Secondary School

• Occasionally seems to be in a dream when instructions are given out, but once she knows what to do she gets on well. That'll be the sensory overload.
• She is very independent in spirit and in behaviour, and on the whole this is no bad thing, but it can be a handicap during some science experiments when there is not enough apparatus for people to work on their own. Enquiring mind. I do like my own company but this was during my first year of secondary school. I didn't know anyone in my form well or at all whereas the others had ready-made friendship groups imported from their primary schools. It is hard to join existing friendship groups but even harder for someone with autism.
• Quiet, conscientious worker. Single-minded. I am a determined sort of person and will give it my all when I am focused and want to. 
• Music - She needs to try to work more cooperatively in a small group; she does not always fully grasp the requirements of the task given, and needs further explanation before she can proceed - possibly this is because she tends to let her mind wander. I don't think I necessarily heard the task correctly and understood it because of my sensory overload and taking instructions literally. Sometimes the music tasks where too abstract such as compose a music piece to reflect time. I remember that well and thinking I dunno, this means nothing to me so I just added some banging on a triangle to suggest a clock striking. The work was considered rather unsophisticated but I didn't have much of a clue of how to meet the learning outcomes.
• She is underachieving this year. She is disengages herself from class activities to a startling extent, and does not work well at all as part of a team. This year 8 English teacher regularly upset me. I did brilliantly well with my Year 7 English teacher who praised me and got me out of my shell and I wrote lots of creative and exciting bits of work. The following year this dragon came along and I felt I couldn't be me. I felt wrong all the time so I withdrew. My year 7 teacher taught me in year 9 and was horrified by how much I had not progressed. 
• PE - she appears to have difficulty co-operating with her peers. I didn't like PE because I felt that the picking of the teams were unnecessarily cruel because two sporty popular people were given the posts of team captains and it was always horrible to be one of the last to be picked. I felt like some bloody ball and chain on their otherwise great netball/hockey team.
• Science - she works quietly and on her own most of the time. She can sometimes show some reluctance to do an activity, particularly those requiring group work or presentations. Yup, the loner/poor socal skills thing.
• Written work thorough. I have a great attention to detail when I put my mind to it.
• I have been particularly pleased that a pupil who is shy by nature has made such an effort to take an active part in lessons (GCSE Sociology). Its easy why - I liked the teacher who plainly liked me as it was clear I loved his subject and we both shared the dislike for people who don't want to learn to the extent that they spoil it for others. Interestingly, I met him in a pub in my late 20s and he remembered me, thanking me for giving him all my typed up GCSE and A Level notes.
• She produces a nice tone on the recorder :p
• It appears that she is constantly making excuses for herself in some lessons. I wonder why an able girl says that she is not able to learn something? (GCSE - Head of year) I wish I could remember what it was that I said I couldn't learn. 

Sixth Form - A Levels

Theology

• She has suffered some recent setbacks in Old Testament. I wish I knew what that meant, although it must be referring to the module on my Religious Studies course. I think it was a bit information overload and intense since we were analysing verses out of the Bible on themes, such as human destination, God's identity and worship style. We were looking at the OT to see how the view of life after death changed is no small task for a 16/17 year old. I remember how we studied Moses and the burning bush and how God revealed his name. 
• Her greatest problem is getting her good ideas down, in a logical order, whilst working at speed.
• Has a rambling approach to essays
• She makes many interesting and very individual verbal contributions in class.

Business and Economics

• She is producing work at a variable standard - if at all. I found that if I didn't have an interest in something, I would be totally turned off. Mind you, I wanted to study A Level Economics but there wasn't enough students so we got put in a Business and Economics combined A Level class which wasn't what I wanted to study. 
• No effort to participate or contribute to discussion. Boring subject.
• Surprised by a high grade in the mock exam. I can pull things out of the bag at last minute if I have to.
• She must ask for help if needed.

Sociology

• Evidence of thorough revision
• Never afraid to ask questions and take part in discussions. 
• Her contributions are thoughtful and always to the point.
• Determined student
• Well structured written work and focused on the questions
• I just liked the subject and teacher so I was in a safe place to be me and not allow others to put me off my enjoyment of the course.

Maths

• She needs to be much more open about her difficulties, seeking support outside of lesson time.
• I gave up this course as I couldn't process getting A grades in Statistics and ungraded in the other units.

Overall

• She can always be relied upon
• She sometimes appears to be very negative about her work.
• She is a quiet, thoughtful and loyal member of the form.
• She has a very strong sense of what is right and wrong. 

Conclusions

Primary school was a largely structured environment full of rules. It was a place in which I felt relatively safe so I think I ticked by okay.

Secondary school was not quite so. We were asked who our friends were during the applying for high school process. This was to work out where we would be placed into classes at high school but I wasn't placed with anyone who was a good friend and it made for a difficult first year. Alas also some of my primary school chums were off to other schools too. Fortunately we had enough demand for the school to make another form for year 8 so we got reshuffled. I think this is telling in my school report because I was unsettled again as I found my way with the new class so some progress I made went back during my second year of school, namely in English. The shuffle was good in that there were some lovely people from primary school in my new form class but also some difficult people too. It made for a challenging school life.

It seems apparent to me that my ability to comprehend spoken instructions were impaired. I know this to be true because any long dialogues can be hard for me to process and I can forget what has been said. Given that the teachers recognise that I might need it repeated, and after which I get on well with my work, it is surprising that this wasn't implemented. It would have been much more useful if the teacher had written the task on the board for those of us who have information overload problems and sensory overload regrading sounds so we could read through the task in our own time.

It is apparent that my motor skills were poor in both art and physical education but this was due to my Dyspraxia. I also had help at primary school with my handwriting because I didn't find it easy to hold a pen. I remember seeing a lady each week for specialist support. 

As I got older in secondary school, I found myself to be in some lessons with my form, which were mixed ability, and in classes that were streamed by ability. It seems obvious to me that where I showed a lack of wanting to participate in group work this was where there wasn't anyone I wanted to pair up with. I never really put myself out there to make friends because I was perfectly happy to be by myself but it was obviously problematic when I had to. I never liked group work much because I resented how some people could coast along off the back of other people's hard work. It bothered me how some wouldn't contribute. However, some of my later classes I shared with my brother so we often worked together on things too. It took some of the social difficulties away from me through having an ally. 

"It appears that she is constantly making excuses for herself in some lessons. I wonder why an able girl says that she is not able to learn something?" (GCSE - Head of year)

We have the answer now. I wasn't making excuses - I was telling them that I was having problems and no one listened. I didn't know about autism and I certainly didn't think I had any learning difficulties. I don't think in the mid-90s secondary schools were really understanding autism in intellectually higher functioning girls. We only started having teaching assistants around this time in mainstream schools and that was for children with physical difficulties. It was a time when Special educational needs and disability (SEND) wasn't on the agenda and teachers perhaps were blaming things on the student's attitude rather than factors beyond our control. I went through a phase of anger that my schools never picked this up but they were a product of their time. I have learnt to let much of it go.

Whilst I don't see masses of hints about my autism, it is clear that it was present in my schooling. I wonder how different life would have been if I had known early on? I guess what I can take from this is that no one accommodated my needs, such as it is after one leaves education. As tough as it was, it must have helped me enormously in learning how to deal with issues off my own back and find my coping mechanisms. And perhaps that has been a good thing for me.

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Supermarkets, Motherhood and small kid tantrums

Once a week I go to a supermarket on my day off from work to do the 'big shop'.
Supermarkets are often places of nightmares for autistic people and when I am feeling low in myself, they can be my nightmare.

The lights can be bright. Too bright. I remember my mother saying she couldn't stand a particular supermarket because the lights flickered and triggered her migraines. She's not alone there. I don't like the brightness and the flashing of lights on some displays during some seasonal promotions.
However, I believe the local Abercrombie and Fitch store has gone completely the other way and one requires a bloody torch to find one's way around the shop, to be edgy or perhaps they just use extremely low watt bulbs to create even more profit. I've so got to take a torch there one day.... That's got its own unique challenges for autistic people and the visually impaired!
And don't get me started on them only hiring shop assistants who are pretty since they are 'models' not checkout assistants...

There can just be too much to look at too, making my head feel overwhelmed by the sheer range of choice with each product trying to get my attention through its packaging. I think though this can be offset a little by the way in which the supermarket is laid out so that shelves and people do not feel too close to each other. There are people all over the place with their trolleys too, trying not to ram each other. There's always the stupid one who makes me think that if that's how they push a trolley, I really hope they are not going out into that car park later and drive...
There is the social anxiety of having to get passed someone who's in the way and me wanting to look at a shelf and someone is blocking it whilst on their phone. There's the boxes in cages in front of the item I want because it's seen as a good dumping ground for it. I never quite know if I should move the cage or not.

I don't tend to have many problems with smell and I think perhaps the combination of my asthma and rhinitis limits the extent of it but I do not have a huge trigger in terms of that sense. I don't personally mind the smell of the on-site bakery and I have fond memories from 15 years ago of waiting at a bus stop next to a Tesco supermarket early in the morning breathing in the glorious smell of baked bread. However, there's the people who go crazy in the toiletries section and must sample every scent to make some hideous gas cloud. That will make me feel overloaded and disgusted, as I think most people would, autistic or not.

There's so many people all chattering away to their shopping buddies and to people on the phones. Other noises like the sound systems and public address announcements appear with no warning and can shock if its particularly loud. A particular shop in my home town has a poor quality sound system and pipes the local radio station through it. Alas, I can't easily shop under one of the ceiling speakers as the sound is so distorted and unpleasant that it does my head in. Way to go, M&Co!
Things can go wrong with trolleys and people bang them about into pillars and all sorts.
Children can be screaming and parents call out for their child to come back as they run off to the toy section.

That last one is all very familiar to me on a personal level and I know that it isn't always easy to have a child who has model behaviour out in public.
I have my young child with me who is now 4.

When she was a baby it was complicated as I wanted to get in and out as fast as possible, mostly because no new mother wants a child with a dirty nappy and half a trolley of food all at the same time. As any sensible parent can attest, one feeds their child and makes sure they have a clean bum before leaving the house. At least sudden changes of plan don't normally happen and anxiety doesn't have to occur about what to do about that smelly poo and the unpaid for tub of ice cream in the trolley.
Most of the time it was simple enough if I picked my timings well. The baby would sleep and I would have to fend off irritating people who wanted to ask annoying questions about my child. I generally coped okay because the conversations were very formulated and predictable but occasionally there was the odd person who thought my child was public property to maul over. Setting boundaries with the general public isn't easy for anyone.
Maybe I was lucky but I found myself doing okay. I was more focused on getting about the place and getting back before she woke up and I needed to get back home to express milk for her. I felt like I was mostly in control and holding myself together.

I won't go into this now as I think this merits a post in its own right but I expressed milk for my baby to when she was just over two and a half years old. I found that my tolerance levels to a lot of sensory overload was lower during this time than it normally was despite facing a lot more difficulties with a new child and all the things that a mother will face.
When I weaned, my tolerance levels dropped and the change of routine was difficult for me. There is some research out there about oxytocin and autism. The hormone is associated with creating feelings of love and bonding and it triggers the letdown reflex in mothers that pushes the milk out. I don't know much about it so it requires some looking into but I can say that my time with all that extra hormone in me made me cope well with things that would otherwise have caused me a lot of panic and meltdowns.

However, as my child got older and wanted to no longer be in the trolley, I found my ability to keep her under my control increasingly difficult and I was no longer having my daily top ups of oxytocin. Sometimes we would have peaceful trips but other times the little one would have a tantrum and a battle of wills broke out. If she doesn't get her own way (wants to look at something or have a toy), she might lay on the floor and scream. She can scream and refuse to move. It is a nightmare and I am acutely aware of my social anxiety with people judging me to be a poor parent. Then my tolerance levels for all the sounds and people can crash where I feel everything is coming towards me like all the sounds and people are suffocating me and I need to get out and away, Its like in that moment I become hypersensitive to everything and the world slows down. I feel a tad disconnected from the rest of the world but only for a fraction of a moment, Its extremely weird but it happens over seconds. I have to walk away from her to reconnect and reboot myself and this helps me get the focus I need to be a good parent. I never walk away where I give up my parental responsibilities or so that her safety is compromised but I now distance myself from her by a few metres. I am unsure if this is the best parental technique but it is the best for me. There is no good me having a meltdown whilst in charge of a preschooler having a tantrum. I need to be the strong one when she can't be.

Now, I am able to battle through my anxieties and sensory overload to get myself and my daughter into a place of safety, such as home where we can recover. I can get myself into a state of logic to deal with her rantings by talking to her and understanding why she is upset so most of the time its easier to prevent things from escalating than to firefight. I can do that fairly okay and I can pay for the shopping and drive us all safety to home. BUT, I am tired. I am in a poor way that evening and she's not going to get a complicated dinner that day!

I do acknowledge that a child who misbehaves in a shop is hard enough for any parent (whatever the reason) but when mixed with an autism in the parent, it can make for a stressful experience. All I can do is try and prevent things and take extra care as we head into the busy Christmas period where shops turn EXTRA crazy and not at all autistic friendly.

Interestingly. ASDA is running an hour a week in the Manchester area for an autistic shopping experience, Whilst it might not tick all the boxes for everyone, its great for those who will benefit from less noise! See the article here

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