My Adult Aspie Life

Life through the eyes of an adult with Aperger Syndrome


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I’m Back

Glad to say I’m back & will be writing again on my blog, I decided to take the .org wordpress site down after a Hacker got access to my personal information through the site owner.

But I will be blogging again, also will be starting a new blog with short stories & other bits & pieces.

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Privacy confusion

pic-confusion1

This is just a quick post, as I received a comment earlier & it’s quite a valid one, I am going to refer to my Children as

  • A – Adam 13 years Old
  • B – Beth 11 years Old
  • C – Chris 8 years Old
  • D – David 4 Years Old

It’s quite confusing to refer to the Children with just Letters, & probably gives off a lack of empathy maybe, only aliases will be used as I think it’s important to respect their right to privacy, any photos will be library royalty free ones.


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Spoon feeding the ignorant

Went to pick up Chris from primary school, keep in mind Chris has full financial support from the state regarding his difficulties.  My wife & I , pulled up in the car, my wife went to get David who was at the pre-school next to Chris’s school, a few minutes later I saw a flash in my peripheral vision, when I looked round Chris hit the side of the car hard, I noticed he was on his own?

Bless him Chris righted his glasses after impacting the car, (he tripped) then ran off in a haphazard fashion towards some parents by the school gate, Chris impacted quite hard on one of the women’s elbow with his head, I cringed as this happened.

I then saw Chis’s ‘exclusive’ special educational needs  TA which the state pays for him to receive one-2-one teaching & assistance, she was keeping two other children in his class under control, but feebly reached with one arm to Chris.

Chris was well out of her reach, & he continued into the school building with her not too far now behind.  The other thing I noticed was Chis’s trousers (pants for our American friends) were almost falling down while he was running through the playground towards the school building, he was desperately trying to stop them falling down, with both hands while running.

I decided to lock the car & go & wait as Wifey would be a little while longer getting David from pre-school & I wanted to be there for Chris when he got out of class, so I walked across the playground, with all the stares burning through me, to a bench & sat down.  I don’t usually leave the car, at all, as I find the whole school pick up time too intimidating, it feels like the walk of shame for me, I’m not sure why, but far too many strangers for my liking.

I didn’t have to wait for long because out pops Chis with no glasses, trousers (pants) falling down, & not surprisingly enough without support, & on his own? This isn’t the first time he’s not been supervised, but today I had seen enough.

The trouble is with the situation we have with Chris nobody seems to care, well not everyone,  his other TA who shares the position, from what I have seen does a great job, & it really shows in Chris’s face when he’s with her, I’ve seen her take Chris out of class a few minutes early to kick a football around the playground to let some steam off when it’s got too much for him in class.  I had seen enough, when the other TA came out, I started feeling a bit resentful, all I could see was the look of disgust when Chris ran into the women by the school gate & through the playground trying his best to keep his trousers (pants) from falling down & revealing all to the other parents & children.

RF library picture

RF library picture

I started firing questions at her, asking where his glasses were?, as he didn’t have them on, he almost knocked into me when he ran out, I asked her why his trousers (pants) were loose? & why wasn’t this corrected to save him a bit of dignity?, as I did his belt up.  I got the answer ‘his glasses are in his lunch box’ when I looked they were all smeared with a mixture of crumbs, butter, & yoghurt, (Chris hates crusts, unless it’s burnt toast) she had no answer for any of the questions.  As I commented how unacceptable this was, & that it’s all in his instruction manual (statement provisions, & protocol) she turned & said ‘I can’t cope with this’ & walked off.

Now I can’t understand if it’s the fact that I emphasised Chris’s dignity was so important to me or if, it was the fact that the poor little might had to have me clean his glasses with my jacket before he was able to see anything…I don’t really know, but we have had the total disregard to Chris’s existence at the school, nobody seems bothered, apart from the academic improvement, although that is nice & we knew Chris was smart & not a ‘poor little special needs kid who had no chance academically’ ( I swear this is what some ignorant teachers think) it’s not all about the performance for us, it’s about empathy, dignity, compassion & the chance to have what other children have, I would of understood the ‘walk off’ if I had cursed, shouted, looked mean, or started throwing insults, but none of this, you have to address anybody around children in a calm & polite fashion, without raising your voice…so I guess it might just have been something she just didn’t want to hear.

We have to spoon feed this school every step of the way, if I’m not writing letters explaining fundamentals in Chris’s statement of SEN I’m getting frustrated with the lack of supervision, empathy & emotional support, it’s such a cold school emotionally.

I felt compelled to write to the school, today, to point out Chris is a human being & should expect the level of support the state provides, we don’t expect super teachers but certainly value for money, & the fact Chris is safe at school, & cared for because of his vulnerability.

I also had to remind them that Chris is Hyper mobile who suffers joint pain regularly if he is pushed too far physically, & that the 1 mile walk to the church across the village is too much for him, we have said this before, & needs transporting there…when will they listen?

I’ll just add before I sign off on this blog that both TA’s that work with Chris by law to give Chris exclusive support, the funding is provided for just him with those particular TA’s


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The blind leading the blind…

Sometimes like any other household we have to have family meetings to get things back on track, well today my Wife & I thought this was a day we needed to call one of these meetings.

The kids had stopped responding to rules of the house, & were generally not doing what was expected of them.  Growing up I have learned well how to mask my disabilities especially now I’m an adult & a parent, & especially around the children.  I have this fear my Aspergers will rub off on them somehow, & so try my best to act Neurotypically around them.

An Aspie or Autistic person can sometimes learn strategies & behaviours to make them stand out less, this process of masking your sometimes odd behaviour comes from maybe bullying when younger, or being treated unkindly due to behaviour you might have displayed while younger.  I can do this to a certain extent but it’s mentally exhausting, & I quite often forgot while ‘acting’ that I need to act so NT, so you may see inconsistent behaviour from me from time to time, which defeats the whole exercise, & make me stand out more unfortunately.

The best way I find to do this is say very little, then you can concentrate on not standing out by your unusual body movements, but even that is hard sometimes, for e.g.. making sure my posture is right, not fumbling with my hands, not touching my face too often, walking correctly, pretending you are making observations while walking with things around you.  However this can get on top of you & be just as difficult as using speech combined & keeping check of the physical attributes.

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Now I am diagnosed I am not so conscious of all of the above behaviours as I feel there is a cause of my weird thinking, & ways & if people don’t get it that’s their ignorance that is misting their understanding, so I tend to act how I wish in public places now, which my Wife finds a bit embarrassing sometimes, bless her.

I still try not to talk that much though as I am quite opinionated & I know this sometimes, but when I get the overwhelming drive to correct something I still can’t help it on occasion 😀

Getting back to the family meeting we were trying to explain to the children how important it is that they try to do the tasks they can manage, & are capable of, this was obviously for child A, B & C…

D is far too little to do the tasks the other children are capable of.  The rules of the house are simple, but they are getting far too distracted with games consoles at the moment & minecraft in particular.

I was helping my Wife go through the house rules, we set some of them.  All are small achievable jobs, as we think it’s important they get a bit of self confidence & sense of achievement, & realise Mum is not the house slave of theirs.  But as I was agreeing & listening I thought to myself that here I am teaching life & rules to children when I have trouble understanding the world as it is, social rules, cues, & communication quite often throws me for a loop…then I thought of that phrase ‘the blind leading the blind’.

It’s important for Autistic parents (parents who are Autistic) to stay confident, children are often underestimated when it comes to understanding confidence in parents, but they are much more in tune to it than you think.  A parent that doesn’t seem very decisive, can telegraph this to children as a weakness, in planning, organisation & parenting in general. This is comprehended by them as generally a green light to do what they please.


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The Mobile Phone store

This got me thinking for the last few days, a situation that I recall when I went into a very popular Mobile phone store just after the Christmas period.

I visited the store after my Son opening his Christmas present & realising there was a blemish ‘bruise’ on the LCD display on his new mobile phone my Wife & I had bought him for Christmas.

I entered the store stood patiently, (which is quite difficult for me) for a representative to be free to talk to, trying my best to conform a ‘normal’ posture, & trying not to stand out in any way.

Finally a representative was free, I explained my predicament, & explained that the phone was purchased online, he informed me that I would have to contact them.  I then explained that it stated on the website that it could be returned to one of their retail stores if needed.  This fell upon deaf ears, the rep explained that they did not do this & that they were two different entities.

Mobile-Phone-Stores-Leeds

Hmm…who was telling the truth?…I decided to ask him for the online contact number, in which he said ‘I don’t have the number’ I immediately decided he just didn’t want to help me, & that the reason behind this was there would be no phone service provider contract commission for his efforts,  as this was a pay as you use phone I was attempting to return.

I said ‘can’t you look on the internet for the number, is there any firewall on your system preventing you from looking?’ he just simply said ‘no’ he then made a pathetic attempt to ask his manager or whoever this was behind him, he also said no ‘they have to go back to the online store’

I then decided to ask him if he was being unhelpful on purpose & why can’t he just use his initiative to investigate google for the number, I don’t think he appreciated this as he seemed less communicative then. he eventually miraculously found the number (using google) & asked the rep from the online store to call me back on my phone.

I left the store told my wife what had happened, she lept out the car, (I think she may have been annoyed) not sure if she was annoyed with me at that time or due to the lack of help I received.   When she returned she commented on their lack of help then produced a refund, stating that she said to the guy I was Autistic, which annoyed me a bit, but she said that she needed to say as this cleared up the fact I may have acted oddly in the store, she said that,  I say what I see, & that sometimes this may come across as rude.

It was a bit of an experience but something that people experience on a daily basis, unhelpful store representatives are one of my pet hates, I do however feel that the unhelpfulness could be due to several reasons.

  • The representative receives very little money, thus promoting an employee that isn’t motivated enough to provide the help the customer needs.
  • They hate their job & pray for someone to end their daily suffering
  • They zone in on you as somebody who might be fobbed off, so they don’t have to make an effective effort.

 


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Go on, you would write a great book…

I keep being asked to write a book by my wife, my Mum bless her, used to constantly mention about it too.  My Mum wanted me to write about my life experiences as she always used to say that I had experienced much more than any person could in two lifetimes.

300px-XFactorTitles

The only thing that made me laugh when I thought about it was, family peer pressure, or false talent acknowledgement, I’m not sure there is such a word but the way my mind comprehends this as one of those families that always say how good their son or daughter is at singing when they are either tone-deaf or screech every lyric…they do this for years then the son or Daughter tries to sign up for X Factor or Britain’s got talent or the USA equivalent.

By then it’s too late as the Son or Daughter who has been lied to, & applies to audition on the show in secret, & when selected they always take their family with them…to watch them fail miserably & be humiliated on national TV, which was cultivated for years by over protective parents, which is quite a selfish cruel thing to do…I always remember a quote from the movie gone in sixty seconds.

When the character Donny is almost maimed by a driver he was instructing, while working as a driver instructor.

” Don’t touch nothing! You can’t negotiate turns. You can’t signal properly. You can’t maintain speed. You can’t parallel park. Hell, you can’t drive, honey. ****, I can’t swim, I know I can’t. So you know what I do? I stay my **** ass out the pool! ”

Donny Astricky – Gone in 60 seconds

So I want to put a few short stories up after reading a few pieces on writing short stories I have two stories in particular but are just drafts at the moment, I think they could be good if my writing improves maybe.

So follow the blog & in a week or two I may have time to sit down & have a try…be good to get some feedback too,


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Funny thoughts…

What I embrace about being an Aspie is the hunger for learning, I love to soak up information, like a sponge soaking up water…sometimes I have trouble shutting this off everyday, so suffer terribly from insomnia.  You will quite often find times for posts past 12am or 1am on my blog posts.

One thing that I can’t do effectively is learn to a time scale, if important I get very nervous & sometimes get mental block or what My wife thinks is lazy syndrome, when I know I really want to do something but my brain won’t engage, I get this a lot with mundane or boring tasks too.

Anyway I was chuckling to myself tonight about special educational law, & protocol which is the ins & outs of statementing, & statutory assessment for funding regarding your child’s SEN  at school.

We have 2 children with a Statement of SEN we frequently have to attend annual reviews for the children.

What I like to do as I’ve been caught off guard with this before when my Daughter first got statemented, is find out about the process, the protocols & generally be on par or one step ahead of the multi discipline team attending when they have these meetings.

What I have learnt is that they have a small out of your presence meeting, then decide what they are going to change if anything & then implement or action this, without consenting with you the parents, which apparently you have some input you would have thought…after all you are the parents.

Well it doesn’t quite work like that, the moment you show you know what the process is about, & about the protocol, that’s it…you are then the enemy…they know a lot of parents don’t know the ins & outs of such a complex overblown, & bloated red tape protocols, so you knowing as much as them about the protocol makes them wary, they have to be very careful not to seem as if they are pulling the wool over your eyes…however they try at every step of the way to force their opinion down your throat then, & disregard anything you have to say, I did record one of the meetings (with permission of course), & asked the SENCO about sensory integration within the statement…he had to ask the teaching advisory representative during the recording what that term meant??…I did not know the head teacher was the SENCO for the school before the meeting, so asked who was the SENCO, when he had asked her what the term meant, I couldn’t help but laugh as I was shocked,  how ignorant that he asked her what it meant, but he should have known? being the SENCO

He got quite nasty when I laughed, I said that I didn’t mean it, & that it was in reaction to knowing he was the SENCO after wanting to know the term I used.

Knowing the basic protocols of the process of statementing it means,  you know all about the time scales they have for implementing the statement, the draft, & you can also request changes as long as they are appropriate to the child’s development & well-being.

The Teaching Advisory service call all the shots here, they advise the school what is good or not, well that’s what they are there for.

Sponge absorbing

But they simply bully you into accepting what was discussed at their little pre-meeting, & that agenda can’t deviate, they are rude & arrogant, they will try to belittle you into thinking you know nothing, they visit the child for usually half an hour to an hour to come to all their advice & conclusions, & the future of your children.

My wife & I,  have come to the conclusion that these people just make you think you have a choice or options for your child’s development or learning, but in fact it is just formality that they come to visit the child, or claim to give you a voice regarding the provisions in the statement.

We have had test results altered to save face for several schools (key stage 2)  TA’s doing the test for them, this has even been admitted, who could ever possibly get a the correct perspective on a child’s abilities, inabilities or needs when tests are falsified, & observations normalised or just brushed over.

It’s all just a formality for what their true agenda is…SAVING money, Special educational needs in this country is costing far too much…we are a burden to the system, this is what message I get from all those years of fighting to get support.

Basically we have been thrown to the wolves so many times over the years to get what education & provisions my children deserve & are entitled to, there is no fight left in us, we have just accepted that when we try our best we attract far too much attention, not positive either.

It is funny though seeing the look on their faces when you know exactly what words they are using in the wrong context, & interrupt to ask why they are just stringing buzz words together in an incomprehensible sentence, thinking you don’t know…I wish I could picture that & keep it forever 😀


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The injury

I was thinking today about health professionals approach to Autism & Aspergers today, & remember going back a few months ago the experience I had at the Hospital near us…Well i say near but it’s 12 miles away.

One of my special interests is repairing things, engines, computers, cars…this comes easy to me as I can visualise quite easy like an exploded drawing the moving parts & order of parts in my head.

This day the petrol lawn mower decided not to start, so as they are such simple engines (4 stroke) I thought I would get it in & have a tinker, after, of course reassuring my wife I would put paper & covers down, it was far too cold for me to attempt this outside.

She is reluctant as in the earlier years of our marriage I wouldn’t have put anything down & got oil, petrol & other gunk everywhere…this planning in advance seems to assure her there will be minimal mess, so I have learnt through the dislike I have for confrontation (especially with her…lol) to do this now.

I get the lawn mower in, after preparing the kitchen first, put my right hand in between the carburettor manifold & air cleaner box to help finish undoing a bolt I think, when I pulled my hand out I had some grease or something on it, so in the rag i had tried to flick my finger & get it off.

As I did this flicking gesture, the whole back of my hand had an excruciating pain surge through it, I thought I had sprained a tendon as this is a usual thing with my elastic joints & tendons…when I glanced at my hand the tendon was not there in my middle finger, & a notch instead.

I started to get scared thinking that I snapped the tendon, but when I made a fist there it was just to the side it normally sits, but not quite in the groove/notch of my knuckle, but at the side.  I made my hand go flat, then a fist again, but it didn’t stay in, I tried to keep it in the groove with my other hand, but it just sprang back in between my middle & smaller finger.

What had I done?… my wife had popped out, but I forgot & started shouting her, I never noticed her not there as I was so worried.  I went upstairs & looked up ‘tendon slipping off finger’ on google it cam up with the medical term ‘tendon subluxation’ I read all I could about this on a website here it mentioned that surgery is necessary to prevent permanent damage.

When my wife got back I told her what happened, she said I ought to go straight to A & E for them to decide what I should do, I showed her the website & told her not to be surprised if they operated on it, she thought the same.

Off I went to A & E…the back of my hand had swollen up like  a balloon by the time I got there.  Finally I was called, a nurse in her 20’s saw me first, she simply asked, what I thought I had done, I told her…she then told me to go home & put an ice pack on it, that it would relocate within 48 hours.

48 hours later nothing, so I thought I will go to my GP…he noticed what had happened straight away, & this time sent me to A & E with a letter stating to go through to see an orthopaedic doctor straight away.  This time it was a young Trainee doctor, she asked an orthopaedic specialist to come & take a look…he said, ‘yes boxers knuckle’ (tendon subluxation) , send him home with a splint.

As soon as he disappeared she said…wait for it…’go home & put some ice on it’ if it’s still that swollen in 48 hours I’ll refer you to the hand clinic, I paused, & didn’t know what to say, I knew she was trying to palm me off by sending me home, but didn’t know how to start off the conversation questioning her judgement, after a specialist which would surpass her knowledge, gave her other instructions??

I just sat there, she leant in towards me which made me feel very uncomfortable, she attempted to force eye contact, I just stared at her shoulder…there was an uncomfortable silence for a few seconds.  She then said…’No, i refer you to the hand clinic now’ so she goes over to the reception A & E desk, & asks for an appointment to be made, the receptionist, barked that hand clinic appointments have to be made at orthopaedics, she said ‘I am orthopaedics then the receptionist said again ‘you can’t make the appointment here, you have to go to that department to make it’

She then paused again, like someone had put her in standby mode, then said to me ‘don’t worry you go home, then I’ll make the appointment when I go back there later’ I already knew she wouldn’t…I came out of there really annoyed & feeling cheated AGAIN!!!

hand sagittal band anatomy label cropped

When I got home my wife got angry saying ‘why did you take that, why didn’t you insist she make the appointment’ I said that it wasn’t in me to argue with medical staff, after all they are there to help you.  My wife said to contact the GP again, so I did, this time he mentioned that he knew staff in orthopaedics from med school who worked at that Hospital & he would have a word.

About a week later, & an appointment was sent to me asking to be examined, to cut the story a bit shorter, I went to the appointment, then several scans of my hand showing the injury & problem, it was decided they would operate asap.

I had the operation, but wasn’t given a splint to wear home & was told to keep it mobilised…hmmm, so after weeks of the wound healing, this had to be done yet again, the second time I was in plaster for 6 weeks, but I’m glad to say after about 4 months it’s healed nicely, I have not got the movement & steadiness I once had in it, but It’s not like a balloon.

The lesson I learnt is…If you aren’t persistent in some instances…as I know my communication problems make it so I don’t convey that well, you won’t be helped, here are the reasons where I think I am being misunderstood…BTW this has been similar throughout my whole life.

  • I start to be pedantic…I go into ‘lets tell people in the medical field my whole medical file’
  • I may come across as having BPD because of the similar traits I suppose to the mental illness, although I think judging by the symptoms of BPD it’s nothing like ASD even though a lot of health professionals think it is similar.
  • They think I’m a hypochondriac or malingerer & don’t take me seriously.

Everybody knows that when something is wrong with their body.  ¬A classic example is just being diagnosed with EDS after suffering in constant pain for years (since I was a toddler) & still now, all other GP‘s I saw growing up, at my first GP’s surgery had me pegged as having some mental illness & always used to say it was a kind of ‘effective disorder’ I was feeling pain but blood tests showed normal apart from raised uric acid levels which couldn’t have accounted for the amount of pain I was in, they were coincidently the ones who missed my Autism too over 25 years of being at that surgery.

Anyway if you have Autism in the UK or anywhere regardless…make sure you are heard, & if you have trouble communicating with your doctor don’t be embarrassed or afraid to take an advocate, somebody who can explain what you mean & help communicate your symptoms…I have to do this now…my wife acts as my advocate, she knows me better than anybody…& insists now that she comes with me to see any health professional.

Not my hand, but this shows the tendon slipping down the side of the finger

Not my hand, but this shows the tendon slipping down the side of the finger

However although I am explaining this from my perspective, I know my NT sister-in-law had the same problem with going months undiagnosed…so it’s quite common now, not sure if it’s the fact we all receive free NHS healthcare in this country & being in a recession has made a good health service into a penny-pinching one I don’t know? but as far as  I can remember I’ve always been treated like this by GP’s.

It would be nice to hear from followers if they ever experienced anything like this or not?


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I am Autistic this is what I need and want…

This is from another blog credit to wherever they got this from…

‘I Have Autism..and this is what I need and want’………

I want to be loved and accepted.

I wish others to tell me that it’s wonderful that I was born.

I need to see others talking about how happy they are with knowing and living with people with Autism, not despite of Autism and not only knowing suffering.

I don’t want to be seen as the source of my loved ones suffering. I want to know I don’t ruin anyone’s life, I don’t want to be a burden.

When I finally manage to gather my strength to tell you something, listen and know all the effort that costs me, respect what I have to say even if you don’t understand.

If I think or feel differently it doesn’t mean I am wrong, it doesn’t mean you are wrong, it means that there is not right way of perceiving the world and that my brain works in a particular way.

Do not deny what I feel, do not think I am lying if you don’t understand.
Don’t dismiss things as me being too sensitive or irrational.
Validate my experiences.
If I can’t hug you it doesn’t mean I don’t love you or that I am insensitive.
If I don’t talk it doesn’t mean I am being rude.

If I don’t talk it doesn’t mean I can’t listen.

Communication is difficult, talking is really difficult.

If I look angry, it’s not always something I can control.

I can’t always control the tone of my voice, I may sound angry when I am not.

Know I can only focus on one thing at a time and changing focus is hard.

If I am happy and really liking a subject don’t say I am obsessed and that this is wrong.

Things that are easy and automatic for you are difficult and need concentration and effort for me, be patient if I take longer or don’t do something.

Don’t laugh at my fears, there is no universal notion of scary, just because something doesn’t scare you it doesn’t mean my fear is silly or funny.

When I want to comfort you I normally don’t know how, believe I am more worried for you than you can think.

I need to know I have a right to exist, a right to be here, a right to be who I am with Autism and all. I can’t be forced to act as someone else. Don’t tell me that everything I do is wrong, that you think every way I act it’s weird, don’t laugh of the things I do, don’t expect that I change everything I need to change for you to think I am worthy of being respected as human.

I need to be taught self-love, pride, self-respect and self-esteem, not how to look others in the eye.

I need to know there is no normal.

I need your patience when I cannot do things or when I do not understand something. Just because you don’t see a difficulty it doesn’t mean it’s not there.

I need to know that it’s a good thing I am the way I am.

I need to know that it’s okay to have Autism, that I am not doing anything wrong, that I am not wrong, I am not flawed.

I want to know that you don’t think having a ‘normal’ child is better.

I am not a broken version of a normal me. I don’t want to be someone that you want to replace with a ‘normal’ person.

If we disagree I will respect you, do the same because people are different, we think differently, we have different opinions, but respect needs to be for all.

I want to honour the beauty and joy Autism brings without denying the struggles.

I wish to be loved not despite Autism, but loved as me, loved just the way I am.

Understand I have a life to be lived, with Autism. Better to embrace it then to fight it.

Accepting Autism, accepting myself as I am is the most satisfying feeling I know.

I know good things and see beauty because of Autism.

My suffering from others attitude is deeper than any frustration that Autism brings.

Autism is part of me and it moulds me, if I wish to love myself, I must accept having Autism.

I need to know that you would never change the fact I was born.

I need to know that it’s okay, and things will be fine somehow, that I am beautiful this way and I have a beauty in the deep way I see and feel the world.


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Negativity

I have been finding myself reading far too many Autism politics & views of NT people…I had to delete the last post I made because of my at the moment single-minded view…resenting what NT people think of Autistic people.

negativity

I have to shake this off sometimes, I must not paint every NT person with the ignorant brush.

I don’t want my blog turning into a depressive journal like do many different blogs I’ve read today about autism.

so please forgive me if I sound like an autism activist 😀

I am still quite resentful about my doctors I have had over the years not having a clue that I was autistic