Has Autism Increased?

If you go on any parenting forums and read threads about ASD - and if you don't I can assure you I do it more than enough for both of us - you'll know it's only a matter of time until someone makes a comment about autism being more common 'these days'.

Sometimes it's worded as an accusation and mentions the 'overdiagnosis' of autism or using ASD as 'an excuse for bad parenting'.  Other times it's a genuine question about whether autism is more common these days (and, if so, why or, if not, why it seems more common) from someone who is curious.

It's hard to give a definitive answer but I certainly have a good idea based on observation and reading up obsessively quite a bit on the subject.  If there's one thing I'm good at it's prattling on about ASD so here we go.

Firstly, no, the answer is not in any way connected to the Goram MMR vaccination.

I think there are several interlinked reasons for the apparent rise in ASD.

Professional understanding of ASD has increased to the point where many more people with Asperger's are being recognised and diagnosed now.  That doesn't mean they didn't exist before; in fact, I wrote a post last week about the realisation I'm probably on the spectrum.  Now, in times past (and even in my own childhood only a couple of decades ago) there's no way anyone would have thought I was autistic.  A bit weird, yes.  And with my slightly 'hippy/alternative' taste in clothes and green hair they probably still think I'm 'that odd mum with the unicorn hat'.

On the one hand, I'm not so odd I bought the hat; Wolf bought it for me.
On the other, he got it because I had an imaginary unicorn friend as a child...
which is perhaps slightly odd.

Going back further, my dad is also very definitely autistic but we didn't understand that until relatively recently (the last few years).  For a long time there were things about my dad that didn't seem to quite fit.  He's a nice person and good husband and father...who sometimes comes out with the most bizarrely unthinking/insensitive remarks (a couple directed at me have been, 'are you really tired or is it just your makeup?' and, 'what's going on with your hair?').

He has a professional job in a highly-paid position with lots of responsibility but if something disturbs his morning routine (having to clean up cat sick, his keys being in a different place etc.) he's completely thrown for the day.

As a child I also remember him getting incredibly annoyed with me for being too loud but he would go about the house whistling and clapping himself even when people were trying to have conversations.

So many 'inconsistencies' and 'quirks' in my dad's character make complete sense in the context of ASD.  There is absolutely no way anyone would have thought to use the word 'autistic' to describe my dad when he was a child - it would have been laughable - but he would more than qualify for a diagnosis now.

Even our cats are starting to look into it...

It's not just the Asperger's 'end of the spectrum' professionals understand better.  More and more research is being done into ASD in general and children and adults with 'classic autism' are being given much more support.  Families being given more assistance means there's a higher chance of autistic children attending mainstream schools and less need for them to be put into residential care homes (though, of course, some parents do still have to make this incredibly difficult decision).  ASD is generally more visible as people see it less and less as something shameful and/or simply unknown.

I had a friend at school whose brothers are autistic but it's only in more recent years I've learned this.  At the time I didn't know why they didn't live with her and her parents full time.  All I knew was they had 'something' that meant they needed extra help and support.  I was completely ignorant and I didn't ask (which I probably should have done).  I hope, even in the decade that's passed since then, awareness of ASD has grown to the point where teenagers now would be more likely to know what autism is and feel they could ask questions.

The rise of the internet has helped massively.  It gives people a place to talk about their ASD - or their kid's ASD - anonymously.  Social media means stories about people on the spectrum are often shared and read quite widely.  People on the spectrum often find text based communication much easier than face to face/spoken communication so you're probably more likely to have a long conversation with an autistic person on an internet forum than in 'the real world', too.

All of this: the greater understanding, the higher rates of diagnosis, social media and the internet in general adds to the perception that ASD is more common than it used to be.  But it's just that: a perception.  The reality is autism has always been there but we wrote off autistic people as 'weird', 'eccentric', 'quirky', 'rude', 'stupid', 'naughty' and a whole host of other derogatory adjectives.

I like to think that's all changing.

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An ASD Christmas

I love Christmas.  As a child I made an 'advent calendar' to count down the days until my actual advent calendar started.  This is not some Scroogy post against Christmas.

I may or may not have bought this elf hat recently.

It is a pretty rough time of year on little kids, though.  I mean awesome and completely worth it but it's coming to the end of term so they're tired out and Christmas is hyped up so much and so far in advance it can be difficult for them to have to wait.

It's also pretty rough on people with ASD and I'd like to explain why.


1. Sensory Stimuli

The chance of sensory overload (a problem for many people with ASD at the best of times) is greatly increased around Christmas.  There are lights everywhere (often flashing), lots of bright colours and reflective surfaces.  There's Christmas music playing, people getting excited and shouting, lots of crowds and parties.  Even the smells are often different and overpowering (all the cinnamon and cloves and...just excuse me for a minute whilst I ask the Wolf to make some mulled wine) and there's new food and textures.

If you don't really understand what sensory overload actually feels like, I'll try to explain from my own experience.  I don't think I'm autistic but I'm very noise sensitive and whilst I don't think what I experience is as extreme as many autistic people it gives me a little insight.

I struggle with noise when I'm trying to concentrate or when there are two sounds at once.  For instance background noise (a song playing quietly) when I'm speaking on the phone, Tyger and Bear both shouting and banging, someone talking to me over the end credits of a film etc.  It feels like it impacts my other senses.  It feels like pressure on my head/face and/or like a blinding light being shone into my eyes.  I can't think whilst it's happening and I feel extremely agitated, distracted and hostile all at the same time.  It's really unpleasant.

That gives you an idea of what a milder version involving only one sense might feel like.  For people - especially children - with sensory issues, it's really rough.

Imagine this searing into your eyes whilst you try to stay calm.

2. Change of Routine

People on the spectrum tend to need a routine. A change to that routine can be hugely stressful.  School and preschool routines are invariably disrupted by nativity play rehearsals, Christmas parties, visits from Santa, games, Christmas films.  Weekends might be changed around to accommodate Christmas shopping or putting up decorations.  Family and friends come to visit, bedtimes and mealtimes become more lax and Christmas day itself can be chaos.

For kids on the spectrum, who have little control over their day to day routine as it is, this can feel very confusing.  It induces anxiety and a feeling of spiraling out of control.  They often rely on the predictability and sameness of their usual week so such massive changes to that can be devastating.


3. Social Expectations

A lot of people feel awkward when they have to open a present in front whoever bought it (I want to seem grateful but I don't want to overdo it so it seems false...was that smile natural...should I tell them I already have one of these?) but there are so many social expectations placed on someone on the spectrum at Christmas that most NT people don't give a second thought to.

Not only are Christmas parties loud and bright and a change from normal routine but they also involve social interactions outside of the usual (dancing, games, buffet style food).  Giving and receiving presents and cards also involves certain etiquette ASD kids might not be aware of (acting grateful if you receive a gift you don't like can seem like brain surgery to them).  Then, there's the big bearded man in red.  A lot of kids on the spectrum won't even sit on their parents' laps, let alone some stranger.

And let's face it: some depictions of Father Christmas
can be pretty creepy.

And the sheer quantity of socialisation expected is overwhelming.  Whether it's relatives visiting, carol singers calling round, nativity plays, Christmas fairs...there's people everywhere.  People talking and expecting eye contact and gratitude.  It's extremely draining.


4. Waiting

Ah, childhood.  Remember when summer holidays seemed to stretch out before you like an eternity?  A week seemed like a month and a year might as well have been infinite.  That sense of time is great when you're doing something you enjoy as a child but when you have to wait for something?  It's agony!  I already mentioned my advent calendar to count down to December - I always felt like I was waiting for Christmas for years (now it seems I blink on Boxing day and another Christmas is imminently looming).

Well, children with ASD struggle with waiting even more.  Autistic children often find it really hard to fill their time.  It's not unusual for them to find 'playing' quite a difficult thing to do and so they get bored very easily.  Add to this the obsessive nature of many kids on the spectrum and the fact they're not good at judging time that's passed and when future points might be reached and waiting for Christmas becomes a nightmare.



I started writing this post before Tyger had a huge - and public - meltdown after his preschool nativity play.  It's one of those occasions where hindsight's a wonderful thing.  I'd put him down for both the Christmas party and nativity because I didn't want him to be left out but I knew it might be tough.

Tyger seemed to cope pretty well until right near the end of the play.  He asked to get down from the stage.  The preschool had made it very clear this was supposed to be fun for the children and they weren't precious about everything being perfect at the expense of the kids' comfort.  Whether the children joined in, wore costumes, stayed on stage, took a parent on stage with them were all down to the children and what they needed so I knew nobody would mind me stepping forward and getting Tyger (he'd asked to get down several times by that point).

Now, what I should have done is take him away completely for some space and some quiet (I even had his ear defenders with me and should have offered him those).  But, I wasn't sure if he wanted to join in with the remaining songs and would be upset to be taken away completely and there were a lot of parents filming the play and I didn't want to get in their way anymore than I had.  So, I sat with him on my lap in the aisle.  He seemed okay.

Then came the raffle.  At that point I really should have left but I had a strip of tickets.  I think Tyger thought they were handing out presents for everyone.  I tried to explain about raffles and prizes but this prompted him to say he couldn't wait for his 'surprise'.  When it ended and we left sans prize (or 'surprise') he started crying...and crying...and shouting.  We got to the car and he refused to get in.

All the other parents traipsed by with their tired but happy children and Tyger cried and wailed and begged me to take him back for his surprise.  I tried to soothe him, I tried being stern, I tried bribery.  But a meltdown is not so easily stemmed.

Cakes!  You can have all the cakes!

I managed to force him into his car seat.  Once home, he refused to get out of the car but - again - I just about managed to force him.  He carried on crying for sometime and I knew the meltdown was starting to ebb when he sobbed, 'Mummy, I can't calm down.'  That's always a sure sign he's ready to stop but doesn't know how.

I blew in his face.  That may sound stupid but when he was younger and had a meltdown he'd hold his breath and I was advised to blow in his face to make him breathe again.  He remembers that and sees it as a way for me to 'stop' him these days.  It only works once he's ready and I always ask his permission.

It was like a switch and he was okay.  It was all out.  The build up of all the noise and lights and people, the strange feel of the costume and the disruption to routine, the anxiety and the frustration and even the excitement and the joy.  It had been let out and he was tired but calm.

I love Christmas.  I love the over the top, gaudy, brightness.  I wouldn't ask anyone to give any of that up.

What I would ask, though, is that you reserve judgement.  When you're out Christmas shopping and a child is throwing a tantrum about their parents not buying them something, please don't tut and roll your eyes.  Perhaps they're some 'spoiled brat' or perhaps they're a child who is tired and overloaded and just can't cope with the crowds and the lights and the noise (autistic or not).

If there's a child at a Christmas party who's hanging back from the merriment, don't immediately try to jolly them into joining everyone else (as well meant as that may be).  First, maybe check if they need a moment away from the noise to calm down.

If you're holding a little Christmas get together and your neighbour's niece is refusing the buffet you've laid out she might not be rude.  Maybe she's struggling with everything and she can't handle the thought of strange flavours and textures on top of everything else.  Offer to put a round of toast on for her or see if she'd have a couple of crackers instead of getting annoyed.

For many autistic people it's the build up of lots of little things that culminates in a meltdown.  A couple of small kindnesses can mean the difference between hours of crying and shaking and a happy memory.

Linked with:

Who's More Autistic?

I wrote about my growing certainty Bear has ASD in a post a few weeks ago (What If There Was a Cure For Autism?).  It has thrown up some interesting considerations for me.  The cubs are brothers with not even two years between them and both have ASD/Asperger's but there are some significant differences in how their ASD presents.

Tyger doesn't 'appear' to be autistic to the untrained eye.  His language has always been ahead for his age and whilst that's not actually uncommon for kids with Asperger's, a lot of people still only know about non-verbal ASD kids or, at least, those with a language delay.

Bear, on the other hand, is clearly very bright but struggles with his language.  He's come on leaps and bounds in the last week or two but still struggles to enunciate and often resorts to grunting, a string of vowel sounds and calling everyone 'Daddoo' or 'Daddy' (though, he has attempted other names - including Mummy!).

Tyger holds in a lot of his more autistic traits whilst around anyone he doesn't live with and a lot of his autistic behaviours are slightly a-typical.  He does his 'verbal stimming' but very few people would actually realise this was an autistic thing, even if they were vaguely aware it was a bit 'off'.

Bear's ASD behaviours are both more visible and typical.  He flaps his hands a lot when he's excited or frustrated and he walks around on tiptoes a lot of the time.  He licks the wall, stove and flagstones and scratches and hits his own face when upset.

Basically, Bear currently looks 'more autistic'.

So, what does this mean?  Will Bear have a harder life ahead of him?  Is his ASD more 'severe'?

I actually suspect it might put him at a slight advantage.  Getting Tyger a diagnosis proved to be a challenge because, whilst the medical professionals recognised his autistic behaviours, other people involved in his care (who were consulted in his diagnosis) didn't see any ASD behaviours from him.  Bear has an older brother with a diagnosis alongside his more 'classic' autistic behaviours so will hopefully get that piece of paper more easily.

But it's not just the diagnosis I suspect might be easier.

Tyger is highly anxious and that's why he 'masks' his ASD when around anyone outwith the family (because he desperately wants to fit in).  He moderates his own behaviour outside the house but it's very tiring for him and often means he's exhausted by the time he gets home and more likely to have a meltdown.

Bear only seems to show anxiety when something in his usual routine or placement of things/people is off (and, even then, it's often anger more than anxiety!).  I hope as he gets older he'll actually be able to cope quite well as long as he has a good routine in place.  I don't think - though, it's obviously early days yet - he'll be as likely to hold everything in as Tyger.  If he's able and willing to do whatever he needs to in order to help stop him becoming overloaded (like the hand flapping or any other stimming) he might find things easier than Tyger.

It's interesting to think about what people consider to be more or less 'severely autistic' and how that translates when it comes to the quality of life the person with ASD actually leads.

The temptation is to think of ASD as a linear scale.  I mean, the 'spectrum' in autism spectrum disorder brings to mind a rainbow and the use of 'high functioning' and 'low functioning' (which many people find offensive, anyway) suggests it's as simple as starting at red and working through to violet.  Perhaps red is a non-verbal child who spends their day doing one repetitive activity in between meltdowns with lots of stimming and no eye contact.  That makes violet the slightly quirky but highly intelligent individual who is able to progress in a prestigious career and live totally independently.  Then all the other colours progress through from one to the other.

The truth is, it's not as simple as that.  That non-verbal child might start talking at the age of seven and end up living alone whilst holding down a job.  The employable aspie might have meltdowns nightly from the stress of their job and self harm from the anxiety it causes them.  Who, in this scenario, is 'more' autistic?  And who has the better quality of life?

Of course, those are extreme examples but not unheard of.  A very common scenario is for autistic school children to have what's known as 'spiky profiles'.  This means they excel in some subjects and areas whilst being far behind average in others.  In other words, they are unpredictable and hard to fit into a box.

Many non-verbal children do end up communicating.  Some start talking, others use picture cards, some use sign language and some find they can type (sometimes incredibly eloquently).  Many apparently 'high functioning' autistic people are never able to live independently, struggle with seemingly simple tasks and have a host of mental health illnesses almost certainly linked to their ASD.

Many people on the spectrum tick boxes at either end of the scale or simply a range in between.

I'm not saying there is no point in terms like high and low functioning ASD (though, I am more comfortable using 'Asperger's' and 'classic autism' as these seem to be far less offensive terms).  Nor am I even saying everyone with ASD has the same severity of autism.  I'm simply pointing out it's not black and white (of course not - it's a spectrum!) and that trying to determine 'how autistic' people are is not important.

Linked with:

What If There Was a Cure for Autism?

About five months ago I wrote this blog post about Baby Bear and my growing suspicion that he - like Tyger - has ASD.

So, have I changed my mind in the interim?

No.

I am surer and surer with every week that passes.  Baby Bear is autistic.

There are many reasons I'm so sure Bear (I really need to stop calling him 'Baby Bear' at some point given he hasn't technically been a baby for almost eight months now) has ASD.  He walks on tiptoes a lot, he flaps his hands when he's excited or frustrated, he has some slightly 'odd' mannerisms like walking around with his head pressed against his shoulder as if he's keeping an imaginary phone in place without using his hands, the way he talks in mostly vowel sounds with very few consonants, he's funny about textures and has become more and more fussy with regards to food, and he has huge tantrums where he screams and screams for half an hour or more and scratches his face and hits himself and...you get the idea.

In the last few days I've been pondering how I feel already knowing Bear has ASD when he's still so young.  How do I feel about having two autistic children, what does it mean for Bear in the future, when should I start trying to get him a diagnosis?  But the main thing I've caught myself thinking over and over is, 'Does Bear do that because he's autistic or would he do it anyway?'

Bear can be quite violent (he might run over to me when I'm sitting on the sofa and suddenly bite me so hard it draws blood) and a week or so ago I pretended to cry after he'd hit me.  He seemed concerned and brushed my hair out of my face.  It was very sweet and it seemed to make sense that he wanted to study my face to figure out what was going on and how I felt.  But, a couple of days later, he hurt me again and - again - I pretended to cry.  This time I had my hair back in a ponytail...so he grabbed some of the loose bits and put them in front of my face before brushing them aside.  I can only assume he has seen me brush the hair out of Tyger's face when he's upset and Bear has decided that's just what you do when someone's crying.  Copying and repeating a social action without actually understanding the reasoning behind it?  Hmm...that's very autistic.

Or is it?  Maybe he did it that first time because he really did want to see my face and liked the fact I smiled so tried to recreate that sequence.  It doesn't really matter whether he did it because he's autistic or not but the fact I wonder so often is interesting and reminds me of a recent conversation I had with the Wolf.  He asked, if a 'cure' for ASD was discovered would I give it to Tyger.  Without really thinking I said 'yes'.

I suppose, at that point, I was assuming a 'cure' for ASD would be akin to taking antidepressants.  When I take antidepressants for my depression (which, incidentally, I wrote about last week) they help with the negative symptoms of depression but they don't change me as a person.  I do quite often feel a little 'spaced' for a week or so but past that I still quote Firefly and Game of Thrones at people, I still drink copious amounts of tea, I still feel socially awkward about strangers holding the door for me but I don't cry whenever the slightest thing goes wrong, I don't take hours to get to sleep.

I know highly you all regard my MS Paint skills.

But would it be the same for ASD?  If there was some 'antiautisant' would it simply take away Tyger's need for certain routines and distress at their change, would it just remove his anxiety, would it help with his sensory issues?  That would be great.  That would be Tyger without so much stress and worry and with fewer - if any - meltdowns.

Or would it stop all obsessive behaviour completely so he wasn't interested in hoovers anymore?  Would it reduce his anxiety to the point where he'd stop telling me he loved me all the time (I strongly suspect he tells me so often for the reassurance of hearing me say it back because of his anxiety)?  Would it mean his unique way of viewing the world would disappear along with the autism?

Would Tyger still have put the old, broken Dyson attachment on his
toy Henry Hoover if he wasn't autistic?

And would he still have decorated one of his Halloween cupcakes with
a Henry Hoover (that's apparently what you're looking at here...)?

Would it, as the Wolf put it, essentially 'kill' Tyger and leave us with a stranger in his place?

Because that's a chilling thought.

This is actually a very controversial debate among a lot of autistic people and the parents of autistic children and understandably, too.  It's unsurprising anyone with ASD who thinks their personality and identity are inextricable from their ASD would be offended by the very idea of something that would remove it.  On the other hand, it's equally understandable someone who feels every day is a battle because of their ASD would be in favour of making things easier.  Then there are the parents of children with 'regressive autism'.  Children with regressive autism often start talking and communicating and developing like their neurotypical peers but they suddenly stop talking, laughing, smiling and engaging in any social interaction at some point as a toddler.  When this happens, the parents - especially if they don't have any knowledge or experience of ASD - can feel like they've 'lost' the child they had.  Like that child has disappeared and been replaced by a different one.  Can you blame them for wanting the child they feel they've lost back, if only fleetingly?  In actuality they have not 'lost' their child but it's not surprising if that's how they feel at the point of regression.

Of course, whilst ASD is still so little understood it's impossible to say exactly what a 'cure' would entail and what it would actually do.

There's no way of knowing whether 'getting rid' of his ASD would stop Bear from brushing the hair from my face when I pretend to cry.  Or take away his cheekiness or his love of his favourite toy and his current obsession with the anime film Totoro.  Maybe it would just stop his violent, half hour tantrums.

Or maybe it would stop him from hiding when he's doing a poo.

It might make Tyger a better eater so he could have his food touching and would consider trying vegetables...or it might stop all his fascinating and quirky questions about how the world works.

Perhaps it would make it easier for my sister to attend college without becoming completely overloaded but it could completely change her interests and hobbies and all the things that make her...her.

To be honest, there's probably no point arguing over it right now because the truth is we just don't know.  That doesn't stop me analysing everything the cubs do, though, and wondering whether they do it because they're autistic or because of their personalities...or whether there's even a difference.

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Interview with the Aspie

I use this blog as a platform to raise awareness and understanding of ASD pretty often but - as I covered in my blog post here - I'm not autistic myself.  One of my sisters is, though, and she kindly agreed to let me interview her to allow me to fully communicate the perspective of someone on the spectrum.  My sister is only 16 and was diagnosed with Asperger's Syndrome just two and a half years ago.  On here I call her 'Aspie Sister' (with her full support - she doesn't see 'Aspie' as a negative term) so that's been abbreviated to 'AS' for the interview.

_________________________________________________________

Me:  I wanted to do this interview to give people a slightly better idea of what it's like to have autism and especially to have a meltdown because I think it's quite hard for people to imagine or to empathise with.  You got your diagnosis quite late, which is often the case for girls.  So, did you realised you might be different to your peers before then?

AS:  I think I always realised I was different.  Thinking back to year seven - I don't know why but I was going through a really weird phase - I'd always tell people I was insane and my password was always like 'iaminsane'.

Me:  I remember, actually, getting a text from you once saying, 'Am I normal?'

AS:  That rings a bell.

Me:  And I kind of brushed it off at the time.  I just said, 'Oh well, what is normal anyway?  Is anyone really normal and is being normal really such a good thing?'  Now - knowing - it shows you did have an idea you weren't neurotypical even if you wouldn't have known to phrase it like that.

AS:  Yeah.  I think one of the reasons I would always be like 'I'm insane' and I'd try to make a joke of it was because I was quite scared.  Because, I was like, 'I'm different.  I don't know what this is.  Why am I not like everyone else?'  I just tried to put this front up and I was all, 'Ah, I'm insane!  I'm so funny!'

Me:  Yeah.  'I'm just the crazy one.'  Like...the 'quirky friend' because that's obviously a 'thing' in TV shows so I guess you thought if you could embody that then it was still an accepted role in society?

AS:  Yeah.

Me:  How did you feel about the diagnosis, then?

AS:  I was so relieved.  Most people are like, 'It's not a good thing you've got a diagnosis.  Why are you happy you've got this label?'  But it is such a relief when I've been thinking I'm from a different planet.  I thought no-one was like me.  To have that and know there are other people like me is just such a relief.  It also meant I could get help.

Me:  You've had a lot of various support and it's worked to different degrees depending on how well the person trying to support you understands ASD.  There are some misguided attempts to help.  People quite often think they're helping by telling you to tell them when you're having problems, don't they?

AS:  Yeah.  Also I'm not good at speaking in person and teachers often say, 'I don't like emails much.  Just come up to me and talk to me about it.'  And I'm like, 'No, just let me email you.'  It really annoys me when they don't email back but then they come up to me and just start talking to me about it and I'm like, 'No!  No.'

Me:  Would you like to explain what having ASD actually means for you and your everyday life?

AS:  I don't know because it's quite hard when you have it and...it's just your life.  People always ask me, 'What's it like to be autistic?'  But, I don't know.  It's just how I am, how I see the world.  For me, I can't imagine anyone else seeing it in any other way.  It's like me asking other people, 'What's it like to be normal?'  I don't know.

Me:  The big thing I wanted to cover was meltdowns.  I was wondering if you could talk me through what triggers them.

AS:  For me it's usually something social.  If something goes really wrong in a social situation that can trigger it for me.  Or if something to do with my routine gets wrecked, especially if it's a routine I've had for a long time.  Like when I always used to have to have spaghetti on a Sunday and then I remember coming home one Sunday and Dad said, 'We're going to have a barbecue tonight.'  I was screaming and Mum and Dad didn't seem to understand why.  They were like, 'But you like barbecues.'  I think they struggled to understand why it was such a big thing for me.

Me:  Can you remember from meltdowns how you actually feel?

AS:  I guess you just feel very overwhelmed.  A lot.  It's quite hard to describe and it depends on why you have the meltdown.

Me:  So, it's not always the same feeling?  It varies?

AS:  Yeah.  And when you start to go into a meltdown you do start to lose control.  And there's this part of you that's like, 'No, stop it.'  You can see it's just silly and you shouldn't be doing it but it's just this tiny little voice and the rest of you is like, 'NO!  This is so important.'

Me:  So, there is a bit of you watching yourself from outside?

AS:  Especially if I'm in a group of people it's like, 'Stop it, stop it.  Everyone's going to look at you.  Stop it.'

Me:  But you can't?

AS:  I cannot.

Me:  It's not something you're doing out of choice.

AS:  No.  And I've noticed I have a lot of actions I just cannot control.  They just happen.  I often just randomly shake my head quickly - especially if anyone tries to talk to me.  I'll just shake my head: 'No.'  Obviously, there's that part of you that knows it's bad that then starts to get frustrated and then that comes out so you get angry and upset and everything.

Me:  So, it's like a loop?  It feeds into the meltdown?

AS:  Yeah and that's when, I think, other ASD people can get quite aggressive.  I don't tend to get aggressive but there have been times where I do get a little bit aggressive.

Me:  It's more just anger at yourself for not being able to stop it?

AS:  And then I can't control the anger and it sort of goes into this horrible cycle.

Me:  Do you typically cry?

AS:  I usually cry.  Usually there's lots of grabbing at myself and my hair - that's something I do a lot - and various shaking and tapping.

Me:  And I know you sometimes pace?

AS:  Pacing: definitely.  And then when the anger starts to build up I start to like, 'Argh!' (clenches her fists) And that's when I'm grabbing even more and sometimes I'll just be like...

Me:  And as you work through the meltdown you often collapse, it seems.  Does that happen a lot?

AS:  Yeah.  I think it all gets too much and I just can't seem to function anymore so I just collapse and cry.

Me:  It's interesting because you lose control but there's a part of yourself that says, 'Don't do this.'  When you're coming out of the meltdown does the voice gets louder or is it that you cry yourself out or...how does it end?

AS:  I usually just run out of energy.  When I was in year nine I used to say I'd run out of tears.  I'd just get to the point where I...couldn't anymore.

Me:  So, is there anything that can bring you out of a meltdown once it's started?  Or is that it and it's just going to run its course until you run out of energy?

AS:  I guess it depends on how bad the meltdown is.

Me:  And maybe where you are and who you're with?  Would you be more likely to come out of a meltdown when you're here, somewhere you're comfortable, and with - for instance - Mum?  Or, because you're comfortable, would you be more likely to let go and would you be more likely to hold it back when you're out with people?

AS:  I try to hold it back more when I'm out with people.  You want, so badly, to fit in.  You just hold it all in and that's often when - when I get home - it all comes out.  I used to find especially on Fridays when I'd had the whole week at school I'd often just end up crying.

Me:  So, after you've had a meltdown do you typically feel better than you did before or do you feel worse...or do you just feel numb?

AS:  I think it depends on where I am.  So, if it's out in public or something, I'd feel worse afterwards but if it's at home I usually feel better.  Sometimes it's just nice to let it all out.

Me:  During the meltdown, is there much in the way of thought?  You say there's a small part of yourself that is just thinking, 'Don't do this,' but other than that are you thinking much?

AS:  There aren't many thoughts but it often is a sort of cycle of what sent you into the meltdown but then it can start to reach out to other things so that makes the meltdown even worse because then you're like, 'And there's this wrong, and there's this wrong and this happened.'  I often keep saying, over and over, 'I'm sorry.'  Especially if it's with Mum or my boyfriend.  'I'm sorry.  I'm sorry.'  They'll say, 'Why?'  And I don't say anything other than, 'I'm sorry.'

Me:  Do you think you're sorry because you think you're putting all that on them?

AS:  Yeah.

Me:  Like you're burdening them?

AS:  I always feel like that.  Sometimes when I get upset about something and I'm talking to my boyfriend he says, 'Go and see your mum.'  And I'm like, 'No, I don't want to put another thing on her.  I can't do that to her.'

Me:  Finally, is there anything you wish more people knew about ASD?

AS:  Probably...that we are people as well.  Some people get scared of us.  People know of the ones who are quite aggressive and violent...or just because it's unknown to them so they get a bit scared.  Or some people just get very angry with people who have ASD and they're like, 'They shouldn't be allowed to reproduce.'

Me:  Jesus!

AS:  Just, if you hear one story of an ASD person who's been violent or something then you get so many horrible people.

Me:  (Sarcastic) Yeah, because neurotypical people are never violent!  I guess it's just ignorance, isn't it?

AS:  Yeah.

Me:  Thank you.

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So...What *Is* Autism?

The toddler group we used to go to has finally started back up, which is good when the weather's pretty dreary but the cubs need to get out of the house.

I can't wait 'til they're old enough to enjoy sitting on the sofa with
a cup of tea on days like this.

There was a nice couple at the group whose little boy has now started school but they came along to offer moral support to the woman who's taken over the running of things (and I imagine for the tea, as well - that's at least half the reason I go).  I used to chat with them quite a bit before summer so they knew Tyger was being assessed for ASD and I mentioned the fact he got a diagnosis.

That's when the inevitable happened.  The dad (not so called just because I anonymise everyone on here but because I can't actually remember his name) asked me what having ASD actually meant for Tyger.

I love the fact he asked because he didn't assume he knew, he was genuinely interested and he wanted to hear from someone who had knowledge and experience of ASD.  Great.  Really, really great (no, genuinely great - why do I always read that word in a sarcastic tone??).

I also hate the fact he asked because I never know what to say.  Autism spectrum disorder is a...well, a spectrum and a disorder (ah, I see what they did there!).  It's not one thing and it varies for everyone.  Just thinking about Tyger alone and what ASD means for him is really hard because it's a combination of lots of behaviours and thought processes that all interact and change.  And it affects others on the spectrum completely differently.

I stuttered a bit about his sensory problems, anxiety and social issues but I don't think I really shed much light on what ASD actually is.

So, what is autism?  This question is harder to answer than you might think.  Right now we don't know the cause of autism so it's a term used to cover a collection of certain behaviours (and by 'we', I mean humanity in general  in case you had visions of me conducting studies and looking at brain scans and...other sciency things).  Of course, we don't know whether this collection of behaviours is even always caused by the same thing.  In some families - like mine - there seems to be a very strong genetic element.  When there are many families with many diagnoses of ASD it's hard to imagine it's a coincidence.  However, there are also people with ASD who appear to be the only ones in their family.  There are also many cases of children showing enough 'autistic traits' for a diagnosis where these traits have probably come from the fact they have been deaf or had hearing difficulties for the first few years of life.  Other times it is perhaps an overlap of other conditions or disorders (like dyspraxia or OCD) that present as ASD.

Hopefully, in the future we'll have a way of separating out these similar and/or related conditions and disorders leading to better treatment or support for them all.  For now, though, there are certain diagnostic criteria for ASD but they do seem to vary depending on where you are and even which set of professionals you happen to end up dealing with.

The NHS website breaks down ASD into two main 'symptoms':

• Problems with social interaction and communication.

and:

• Restrictive and repetitive patterns of thought, interests and physical behaviours.

You may also have heard of the 'triad of impairments'.  This is not a member of the Chinese mafia who deals with problems and difficulties.  It is three areas in which people with ASD struggle, often demonstrated by a triangle:

What do you think of my incredibly basic awesome Paint skills?

Depending on where you look, the exact wording might be different.  You might find 'flexibility of thought' becomes 'social imagination', for one thing, but generally the three 'impairments' cover the same things regardless of the exact wording.  Does this all sound a bit vague and confusing and like there's a lot of cross-over?  Welcome to my world!

It might help for me to use Tyger as an example to put these terms in context a little (or it might not but if you've made it this far you're about half way so might as well keep going now).


Social Interaction

Tyger struggles with 'appropriate' social interaction.  It's not that he doesn't enjoy talking to people because he does...a lot.  But he'll stand or sit too close to them because he's completely unaware of other people's personal space.  If I find him a bit suffocating then I can imagine it's off putting for other people (and I've seen other children get angry with him 'playing' by pretty much sitting on them so kids pick up on this stuff from a young age).

Whilst I hate the emphasis put on eye contact when discussing ASD, Tyger does have reduced eye contact and he finds it tiring to have to look at people's faces for any length of time (a conclusion I only reached quite recently, as I wrote about here).

He struggles to identify other people's (and, in deed, his own) emotions.  More than once, Baby Bear has cried and Tyger's response has been, 'Look, Bear's happy!'


Language and Communication

This does not mean Tyger is 'behind' in his language.  In fact, as the speech and language therapist (SALT) put it, his language is very 'sophisticated'.  He had over 200 words in his vocabulary when he was 18 months old, which is quite a lot (for anyone who doesn't have kids: the average for this age is something around 20-50 words (and for anyone who does have kids you'll have obsessed over numbers like that until your child was at least two so you'll already know)).

There were some oddities, though.  'Mummy' and 'yes' were not included in those 200+ words!  Two of the very first words children learn and they were nowhere to be seen.

In a similar vein, the SALT said it was interesting to note how - despite Tyger's language being advanced in many ways - the areas of language where he was more average or even slightly below average were connected with social awareness.  For instance, he comes out with amazingly grown-up phrases and has a huge vocabulary but still uses 'he', 'she' and 'it' interchangeably when talking about people.

It's also very common for people with ASD to have trouble processing language.  With Tyger - and with other members of my family - this means he will frequently respond with 'what?' to anything you say.  He's heard the words but needs a moment to actually make sense of them although I wish he would do so without the immediate 'WHAT??'.


Flexibility of Thought

The worst part of this for Tyger right now is the fact he seems to think once he states an idea, it is agreed upon and will happen.  So, 'I know, let's go outside,' in his head is, 'Everyone has agreed we will definitely go outside this instant.'  It's hugely frustrating and no amount of 'no' stops him.  I've tried other tactics like explaining the weather is awful but he'll just come back with, 'I have an idea; let's wear our boots.'

I need to hide these!

He just keeps asking, and telling, and explaining and generally going on and on and on and on and on about going out-smegging-side for hours and hours and hours and hours and...you probably get the picture.

He also struggles with changes to routine and 'the norm'.  He has a biscuit after lunch every day so if he sees a character on TV eating a biscuit before lunch he's utterly incredulous.  The mere suggestion of such blatant disregard for biscuit eating rules is unthinkable to Tyger.  There are also two lanes from the road to his preschool: one big and one small.  My mum dropped us off nearer the big lane the first few times we went so Tyger cannot go down the smaller lane on his way to preschool.  On the way back, yes.  On the way there, don't be so Goram ridiculous.  Going down the small lane on the way to preschool is almost as bizarre as eating a biscuit before lunch.



So, could I have just said all that to the guy at the toddler group?  Even if his eyes didn't glaze over after the mention of eye contact it doesn't mention all his sensory issues, which are a massive daily problem.  It doesn't touch on meltdowns, what causes them and what they're like.  And it's just picking out a few points from the many, many battles and problems and differences Tyger faces every day.

It's a tough one.  I want people to ask because I'd rather they showed an interest than either avoiding the subject or making assumptions and silently judging.

But I don't know what to say when someone actually does ask.  I want to get across everything but I don't want to lecture them until they turn off.

Any suggestions gratefully received.

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Tyger Has a Diagnosis

It's arrived.  I expected the envelope to contain the report from Tyger's last appointment and perhaps even an appointment for the next step.  It did contain the report and...an official diagnosis!

So, I can formally say - though, I have been informally saying it for about a year now - Tyger has 'High functioning autistic spectrum disorder', which is basically Asperger's (they just don't tend to use the term anymore).  In fact, the child psychologist herself referred to it as Asperger's both in the appointment and in her written report.  I only mention this because I think a lot of people have a better idea of what is meant by 'Asperger's Syndrome' than 'high functioning ASD' (not to mention the controversy surrounding the use of the phrase 'high functioning').

However, as much as the term 'Asperger's' is helpful in some ways, there are some misconceptions (okay, loads of misconceptions) about what it means to be an Aspie so I thought I'd address some of those.

Firstly, no Tyger does not have a 'special ability'.  I think Rain Man is probably largely responsible for the belief that all Aspies are also savants.  They're not.  Sadly, Tyger is not likely to earn large sums of money through counting cards or drawing amazingly accurate pictures from memory.  He can't glance at a group of objects and tell you immediately how many there are (unless there are three because before he's actually counted anything he will always tell you there are three...I'm not convinced that counts as a special ability, though).

I already covered this second point in my blog post last week but it's worth reiterating: it is a myth that autistic people don't feel empathy.  In fact, there's good reason to believe people with ASD often feel empathy far more keenly than their neurotypical counterparts to the point where they are completely overwhelmed by it and incapable of action.  They also often don't know the socially acceptable way of showing said empathy.  These problems mean - to the casual observer - they may seem indifferent to someone else's suffering but the truth is they may be so affected they are struck by an inability to do anything about it.  We have our own example of this in our house.  One time my sisters were playing on a water slide in the garden when my parents were out.  My youngest sister badly hurt her leg (think: lots of blood and tears).  So, my Aspie sister reacted by...leaving Youngest Sister out there to cry and going inside for a shower.  She has since explained that she didn't know what to do and apparently she has her best ideas in the shower so this seemed to be the most sensible solution.  The epiphany she had in the shower was to make ice cream floats.  I'm not sure how much this helped Youngest Sister's leg but I guess it distracted her.  It wasn't callousness that sent Aspie Sister running to the shower instead of helping and comforting Youngest Sister, it was simply the helplessness she felt when confronted with this entirely new scenario.  She wasn't equipped to deal with it but I can assure you she's an empathetic person.

The third one is probably one I've covered before, too.  It is absolutely not true that autistic people always prefer their own company and don't want friends.  I mention this as something my mum was told by a fracking doctor, who should know better.  When my mum first took Aspie Sister to the GP with her concerns the GP told her 'the good news' was it wasn't autism because my sister 'wanted friends'.  Any time my sister sees that GP now my mum always mentions her ASD diagnosis very pointedly.  ASD is a social and communication disorder.  Aspies do struggle with social situations and communicating in a socially acceptable way.  Because of this they may find it hard to make or keep friends but that doesn't mean they don't want any!  I struggle to do lots of things.  Hey, I find writing most of these blog posts hard; obviously that means I don't want to write a blog...right?

Fourthly and finally I'm just going to straight up steal a great saying I've seen floating around the internet.  If you know one person with autism; you know one person with autism.  It's a big smegging spectrum and even aside from all the autistic traits varying from one person with ASD to the next, their personalities also vary.  You know, just like how everyone else's personalities vary?  If your neighbour's cousin's autistic friend once had a meltdown because you put the milk in their tea before the water (although, why anyone would do that in the first place is completely beyond me but I guess this post is all about accepting that people are wrong different) that doesn't mean the next autistic person you meet will even like tea, let alone get worked up by how it's made.

I hear some of them even drink coffee.

Anyway, back to Tyger's diagnosis.  How do I feel about it?  I've wondered for a year now how I'd react to finally getting that letter.  Would I feel relief that it's been recognised and he'll find it easier to access the support he might need in the future?  Would I feel vindicated?  Would I feel upset despite already knowing he had ASD?

Actually, I don't feel much.  Perhaps the numbness will wear off at some point but I suspect it's more the fact I've come to realise a diagnosis isn't the end point I once thought it was.  Okay, so Tyger is officially autistic now: that doesn't change his daily struggles (or mine).  He was already autistic before we got the letter through and he won't stop being autistic now.  I'm glad he has the diagnosis because it may make a difference at some future point but life isn't a film with a nice neat conclusion.  I want to say the wheel never stops turning but it doesn't seem appropriate to start throwing in Firefly references so I think I'll stop here...



...That only matters to the people on the rim.

Sorry.

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Look into My Eyes

So, this is part two of my updates.  This time I'm covering Tyger (because I mention him sooo rarely...).

Tyger

Tyger had an appointment with a speech and language therapist as part of the diagnostic process recently.  It went pretty well.  She was lovely and told me she 'could see what I see' (i.e. Autism).  She gushed about Tyger quite a bit and about his vocabulary and language skills and said she'd love to work with a child like Tyger.  I suppose there's a chance she does this with every child and parent to put them at ease and get them on side but I - of course - believe Tyger is a child genius so I'm sure she was genuine.

Pretty much the first thing to come up was my old friend 'eye contact'.  Until we saw the paediatrician back in April, every health care professional with whom I brought up ASD trotted out the familiar line of, 'Hmm...well he makes good eye contact...'  This meant it came as surprise to me when the paediatrician mentioned a lack of eye contact in her report.  The speech and language therapist (or 'SALT') picked up on the fact it took Tyger a looong time after entering the room to actually look at her face.  And whilst he did give eye contact after that, it was sporadic and fleeting.  I think of it like trying to force two magnets of the same polarity together.  He'll look but his gaze swings away pretty quickly and it's an effort.  I never thought about how much of an effort until I was trying to cut his fringe the other day (for any non-Brits reading this 'fringe' is what we call 'bangs').

Now, I've cut Tyger's fringe many times and it has always been a struggle.  He won't stay still and trying to get him to look at me so I can make sure it's at least vaguely straight (I think it's unrealistic to aim for poker straight and completely horizontal but I do try to avoid the stairs or ramp across the forehead look as if someone might need access from his ear on one side to his scalp on the other).  It just so happened, whilst I wielded hairdressing scissors and promised a biscuit when we were done, my parents were having a look at the SALT report.  So, I was going through everything the SALT had mentioned at the same time I finally managed to get Tyger to look at my forehead for maybe 15 seconds (it doesn't sound like much but sit and count out 15 seconds - that's a looong time for a three year old to sit still) and suddenly he looked shattered. Honestly, his eyelids drooped, his face went slack and I thought for a moment he might fall asleep there and then.  The revelation hit me: looking at people's faces and especially eye contact are physically draining for him.  I knew it was 'hard' but that's quite an abstract concept and I'd sort of assumed it was hard in the same way it's 'hard' for me to not eat Peanut M&Ms if they're just sitting there.  Realising it actually tired him out was a bit of an 'ah ha' moment (and made me feel a little guilty).

Come the end of the appointment she reassured me she 'saw what I saw' (i.e. ASD)., although said it was 'subtle'.  He'd give a doll a drink (with prompting) but was concerned there wasn't any milk in the cup.  He'd bath the doll (with more prompting and Tyger making excuses about being too busy) but was perturbed by the fact the doll's shoes wouldn't come off (they were painted on).  She thought it was interesting, since Tyger is so advanced with his language and vocabulary, to note the aspects of his language that are not advanced.  Namely, anything social.  He comes out with all sorts of adult sounding language and phrases but still uses 'he', 'she' and 'that' interchangeably.  I didn't disagree with her but Tyger's ASD is not so subtle when he screams for 20 minutes to the point where he makes himself throw up because I mentioned the guy who cut my parents' hedge is on holiday.

The next hospital appointment he had was about a cyst under his eye, which just won't fracking go away.  It's been there for months and is as persistent as Baby Bear when he's decided he wants some chocolate buttons (though, the cyst doesn't keep pointing to the basket with chocolate in and going, 'Ugh, ugh, ugh, ugh,' before crying and crying when I say 'no' then starting all over again - the cyst is just...there).  I hate these appointments because you're triaged as you come in so we tend to end up waiting about an hour before seeing a doctor.  And there are no toys in the waiting room.  And no hot drinks allowed.  And now Bear won't sit nicely in his buggy for the duration so there are TWO of them running around wreaking havoc.

However, Bear running around and wreaking havoc turned out to be a big bonus this time because he was kind enough to trip and sort of smack his forehead off the floor.  He screamed.  I mean, he really SCREAMED.  And he just kept on and on.  Doctors and nurses were trying to call patients in for their appointments but nobody could hear what they were saying.  It would have been horrible...if it wasn't for the fact it got us bumped to the top of the list!  Hooray for Baby Bear!  I am tempted to stick a foot out as Bear runs past at the next appointment...

Anyway, the doctor we saw after Bear's spectacular fall was fine...except he mentioned the hair.  I wrote at length about Tyger's long hair in my blog post Yes, I Bought My Son a Dress.  His hair's even longer now and the comments and confusion have in no way decreased.  The doctor just couldn't seem to help himself.

'I called you in and I was so confused.  I checked the notes here and it definitely said he's a boy.  I thought, 'What's going on here, then!?''

What is going on here?  More Goram sexist bullshit!  I am just astounded a doctor who must see hundreds of patients a week is so utterly baffled by a boy with long hair.  My hair is green at the moment, by the way.  Bright green.  I have not had a single comment from any stranger about my hair.  It is obviously in no way noteworthy (or they realise how rude it is to comment on a stranger's appearance when that stranger is an adult...) but a three year old boy with long hair??  That warrants comments pretty much every time we go out (which, granted, is not often).

There you go.  You can judge for yourself.

Then there was the most recent hospital appointment (seriously, the last two weeks have seen an inordinate number of trips to the hospital, which would be less of an inconvenience if Tyger didn't get car sickness...).  This one was the last assessment for Tyger before his diagnosis and was with a child psychologist.  I was expecting a similar drill to the last two appointments concerning Tyger's diagnosis (questions directed to me about how he behaves in various situations and some play with Tyger whilst observing him).  That's not what happened.  She informed me, as far as she was concerned, she should be there to help with behaviour and asked how she could help.

I was a little taken aback (where were the questions about how he interacted with people and how his diet is and what his interests are and how he reacts to change?...where were the questions for Tyger and getting him to perform certain tasks?).  I put forward some of the problems we're been having and pretty much everything I mentioned was met with, 'Well, all three-year-olds do that...'  I started to panic.  Did she think I was overreacting?  Did she think I'm just a terrible parent who struggles to cope with perfectly 'normal' preschooler behaviour?

This child pyschologist was the one who diagnosed my sister.  My mumcame out of that appointment completely nonplussed.  She didn't know whether my sister had been diagnosed, she didn't really have any idea what had happened.

The child psychologist openly says she suspects herself of being on the spectrum.  I think, perhaps, she doesn't see the point in telling parents their child has ASD when it was the parents who brought it up in the first place.

Whatever the reason, I was unnerved until we were leaving and she explained she'd tell the paediatrician her recommendation was an Asperger's diagnosis.

Then quickly ushered us out of the door!

Now it's a case of waiting...but I'm hopeful.

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