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.

Linked with: 

Am I Autistic? Take Two

I don't like lying.

With this in mind, I'm sorry if I have deceived you.

I wrote a blog post titled Am I Autistic? over six months ago.  My conclusion was I exhibited a lot of ASD traits/behaviours but no, I absolutely was not actually autistic.

Huh.

It seems I may have thought I wasn't autistic but others - specifically my parents and Wolf - are of a differing opinion.  Not necessarily at the time of me writing the blog post but certainly more recently.  We had a conversation about ASD a few weeks back (a pretty regular occurrence in this household) and it came up.  Since then, I have read up a bit more on females with Asperger's and have even taken a pretty good online test...with the conclusion I probably am autistic.

Wolf said he thought I knew.  I didn't.  I knew they joked about it but I didn't realise they were serious.  Not that it's in any way autistic to not get when someone's joking...or anything...

I've started to assess my behaviour in the way I do with Tyger and it's a little disconcerting.

There are certain things it seems I do - and probably have done for years - that I was totally oblivious to.  Apparently, I violently rub my face when stressed.  I also bite my thumbs (not like some Shakespearean character trying to insult someone in a rival family but biting down on the knuckle absent-mindedly).

Like this.  Huh, looks like my teeth are off-centre...never noticed that before.

Having asked my parents what my most obviously autistic traits are they've said I'm obsessive, like routine and have always been a bit of a loner (and the close friends I have had have generally probably not been neurotypical themselves...and at least one of them reads this blog so...umm...not you, obviously...).

I don't know what they're talking about.  It's not like, when I was a teenager, I used to read through my Friends books listening to my Friends CD with my Friends poster staring down at me and test myself on my Friends knowledge using my Friends daily calendar in between each episode of Friends...when I'd always make sure I had a mug of milk (Friends mug, of course) on my Friends coaster with the same number of biscuits in plenty of time so I could always clap along with the theme tune...on a Friday night...at home...with my family.  An obsessive, routine-driven loner!  Pfft.


This week I went to the first session of the 'EarlyBird' programme (a course for parents of young children with ASD).  What better place to start analysing myself for autism than on a course all about autism with a load of parents of autistic children?

First clue was how anxious I was about going.  New place, new people, not knowing what to expect - it's a lot to stress about and stress I did.  Queasiness and pressure on my head and face (somewhere between numbness and feeling like they were being squashed) seem to be pretty reliable signs of my anxiety.

Actually, Wolf has said I'm at my most autistic (he probably worded it differently, to be fair) when preparing to go somewhere new for a specific time.  I'm not sure exactly what I do!

Once there, I coped pretty well with going in (desperately trying to remember the direction from which I entered the building so I'd know which way to go at the end because I could get lost in a phone box) and meeting everyone.

I did almost have to leave the country and live as a hermit forever more after declaring the big hot water flask for tea and coffee was empty only to find out it needs pumping.  I valiantly stayed and didn't even curl up into a ball in the corner!

So, we began.

The room where the course is held has those horrid tube lights.

I have problems with light.  There are days when it's not hugely bright out but I find myself squinting and struggling to look up at all (not at the sun but just up near the sky), whilst everyone else is unaffected.  That's nothing compared to my problems with artificial lights, though, and certain colours of bulb that make everything seem either really saturated or unsaturated and I can't focus on anything properly.  It comes up in my dreams a lot and I spend a lot of my time feeling like I've suddenly gone from darkness to bright light and my eyes haven't adjusted yet and those lights didn't help.

There was constant noise, too: rain drumming on the roof, a video playing in the next room, people in the reception area.  It made it hugely difficult for me to focus on the video we had to watch.

And I noticed myself doing...things.

People with autism often have a problem with 'proprioception', which is your ability to know where your body and limbs are in space without having to look.  Sounds ridiculous, right?  How can you not know that?  That's what I thought until I realised at this course that I totally have problems with it.  I was sat there struggling with the lights and the sound and realised I was doing all these little things to keep me 'grounded'.  I was constantly rubbing my toes together, I had my legs crossed and was pressing the top leg into the bottom one really hard.  And I was constantly pinching myself, digging my finger nails into my hand, pushing my fingers together or stretching them really far apart.

What happened if I made myself stop doing all these things?  I really did feel like my body was floating, like I couldn't really feel my limbs without concentrating really hard on them and on the feel of the fabric of my clothes touching them.

I sat there listening to people talking about the sensory issues people on the spectrum have and they were talking about me.

Not that anyone would have known to look at me: they couldn't see inside my shoes at what I was doing with my toes, couldn't tell how hard I was pressing on one leg with the other, and it's easy to push your thumb nail into your hand so nobody can see.

See, just normal hands with fingers interlocked.
Except, I'm pressing the nail of that bottom thumb in my finger.

It was thought ASD was far more prevalent in boys than girls.  However, the more we understand about autism the more evidence suggests girls actually present in a very different way and tend to be very good at 'masking' their ASD.  When it comes to supposedly 'higher functioning' ASD, these girls' autism goes completely unnoticed until they reach puberty and then the combination of physical and emotional changes, the increased social pressure and the greater academic demands suddenly all combine to completely overwhelm them and that's the point at which - if they're lucky - they might get a diagnosis.

If I have ASD I have always been very good at masking it.  I have been so good at masking my autism, in fact, I've hidden it from myself.

What now?  What am I going to do with this information?

I don't think I'll try to get a diagnosis.  Not right now, anyway.  I will need to start pushing to get Bear diagnosed soon and I don't think I can cope with both.

What I will do is cut myself some slack.

I have always thought I was a terrible friend because I find it really hard to reply to messages or initiate contact or meet up.  I agonise over every 'hi, how are you' and response.  I start messages and never finish them because it's just too much.  Knowing there's a good chance I have a disorder that predominantly affects social interaction and communication makes me feel a little less guilty.

I'm not an uncaring friend; I'm autistic.

I have always suspected I'm a bad parent because at times I know I should be playing with the cubs and instead I am sat on my laptop.  I think actually my ASD means I get so overloaded by the boys' constant noise (which is part of their ASD) that I retreat and the only thing that stops me breaking down and crying in the bathroom is focusing on my laptop for a while.

I'm not an indifferent mum; I'm autistic.

I always thought I was useless because I don't do things I know I need to do like sorting out various insurance or phoning the hospital about something.  I knew I was physically and intellectually capable so didn't understand why I just couldn't bring myself to do these things until well after the point where they needed to be done.  Now, I understand my problems with executive functioning and anxiety - both elements of ASD - are probably to blame.

I'm not lazy; I'm autistic.

Knowing I'm probably autistic is enough at the moment.  It's a relief just knowing why I am the way I am.

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:

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.

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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.

Linked with:

So Much for a Diagnosis

I feel a bit like I'm in a fishbowl at the moment.  I'm not under any illusion that me and my life are so fascinating everyone's crowding round for a peek into the Nym household.  I really don't think anyone's that fussed by watching me killing time on my laptop or telling Tyger not to snatch toys from Baby Bear several hundred times a day.  It's hardly Downton Abbey.  I mean, I haven't actually watched Downton Abbey but even with my limited knowledge I'm pretty sure it doesn't involve green haired women checking Facebook and autistic preschoolers getting irate over younger siblings daring to touch their ride-on fire engine.

I still feel like I'm in a fishbowl, though.  It's no secret I'm not exactly a social butterfly; rather more of a...reclusive moth.  Actually, I really hate caterpillars so this whole metaphor is freaking me out a bit but basically I don't go out much or see many people outside my immediate family.  My parents have had the builders in to do a variety of things to the house over the last couple of weeks.  I don't like other people in the house.  I don't like other people to see me when I'm still in my pyjamas, when I want to relax (as much as is possible with the cubs), when I'm trying to deal with Tyger's meltdowns or Bear's tantrums, and when I'm on the toilet (yeah...I was on the loo when one of the builders appeared at the window - I thought perhaps he wouldn't have known it was me through the net curtain until my sister pointed out I'm the only person in the house with bright green hair).

So, I was already feeling a little sensitive about people watching me and judging me and - in particular - my parenting.

This is fine, right?
Bear isn't quite on the window sill yet...

I wrote a few weeks ago (here) about the fact Tyger now has an ASD diagnosis but how it doesn't really change anything for us right now.  Except, of course, I won't get challenged about his ASD by any professionals because they'll accept he's been officially diagnosed after a thorough assessment.  Right?

I'm guessing you know how this sort of rhetorical set up works and have figured out that's exactly what I'm dealing with.

I have had a few comments from Tyger's preschool about how the staff there haven't seen any of the behaviour mentioned in his reports and diagnosis but they have generally been supportive and proactive and to start with it seemed like honest feedback and nothing more.  But the play leader spoke to my mum last week and the conversation could not be construed as merely honest feedback.

She asked my mum (who used to be a play leader herself) whether Mum was surprised by the fact they hadn't seen anything from Tyger's reports at preschool.  My mum replied that she wasn't surprised at all and it is, in fact, very common for children with ASD to mask their autism whilst at school or preschool.  The play leader seemed surprised.

It is actually a problem many parents face when trying to get a diagnosis because schools or preschool settings can be very uncooperative when a child seems 'fine' to them, even when the parents are telling the school their child is not fine at home.  Having ASD doesn't make someone stupid.  A lot of autistic kids know they're different to their neurotypical peers and attempt to hide it as best as they possibly can.  They try really hard to blend in around other people: watching and mimicking, holding in the anxiety, stopping themselves from stimming (repetitive physical movements or sounds), and gradually becoming overloaded by all the sensory stimuli (noise of the other kids, lights, smells in the lunch hall, itchy tags in school uniforms etc.).  This is exhausting and often means the child will let out this big build up when they get home.  So, the teacher sees a 'normal', quiet, agreeable child...and the parents get the meltdown.

Tyger currently goes to preschool two mornings a week.  The afternoons of these days are hard.  Last week he literally came through the door of the house already verbal stimming and agitated and had a meltdown over something trivial within five minutes of being home.  The preschool don't see this behaviour.

And, it seems, the play leader may have come to her own conclusions as to why.  She didn't just ask whether my mum was surprised by their observations.  She also asked Mum whether Tyger behaved better for the Wolf than for me.

She might as well have said, 'I suspect Tyger is no more autistic than any other child at the preschool and the problem is Nym's parenting.'

This is pretty common view.  Many parents have been battling this notion for years but it's the first time I've been aware of it being directed at me.

It's not nice.

I should point out this is a good preschool with dedicated, kind employees (including the play leader who spoke to my mum; she is not some sort of monster) who care about the children.  It has an outstanding rating from OFSTED.  Tyger loves it there.

But they don't understand ASD.  Not yet, anyway.

If a decent human being with lots of experience of children who has their best interests at heart can fall prey to this cliched opinion, anyone could.  I don't yet know what I'll do or say in terms of Tyger's preschool but I do know I'll keep writing blog posts that talk about ASD in the hope they'll help to educate even one or two people out there.  Because that's a worthwhile cause.

Linked with:

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.

Linked with: 

I'm Not Crying...No, Really!

Tyger had a home visit from his key worker and the SENCO (special educational needs coordinator) early this week in preparation for him starting preschool.  It was just a quick visit to see him in his home environment and to let him meet them again before the induction.  It went well.  Tyger even agreed to wear clothes...although he removed all of said clothes in order to change into a Gruffalo onesie part-way through the visit because...it...was...essential...or something.  Also, the 't-shirt' he was wearing was actually a pyjama top because that's what he wanted to wear and he didn't have pants on under his trousers but he agreed to wear clothes, however briefly.

The next day he had his induction.  I had to take Baby Bear along because my mum - who lets us all live with her/my dad/my sisters rent free while we're saving up a deposit, cooks dinner most nights, often watches the cubs whilst I shower/make their dinner etc., and generally leads a pretty selfless existence - had the audacity to be unavailable to babysit Bear due to acting as taxi to my sister.  I know, the absolute cheek of some people!  So, I didn't really get to watch Tyger much because I spent the first half hour trying to stop Bear from scooping sand from the sand tray onto the floor and the second half hour trying to stop Bear from scooping soapy water from the water tray into his mouth (actually, that's a lie; I spent about two minutes trying to stop him and then let him get on with it since it's no different to drinking bath water and both boys have consumed litres of that with no ill effect (I'm pretty sure there's no link between drinking bath water and autism)).

All that's left is for Tyger to start.

And I'm not upset by that.

I've read a lot of very good blog posts in the last few weeks about children starting preschool/nursery/school and the consensus seems to be this is something upsetting.  When I was at the induction, one of the other mums made a joke about trying not to cry on Tyger's first day.

Once again (like in my blog post Babies Don't Care About Birthdays) I'm left feeling like I'm missing something.  I'm not upset about Tyger starting preschool.  At all.  In fact, I'm looking forward to the peace and the opportunity to spend some one-to-one time with Bear.

There are several reasons I can think of for this disparity between other people's emotions on the subject and my own.

It may well be in part because unlike school or some nursery places, he won't be going every day.  He will start off doing only two mornings a week with a view to working up to two mornings plus a full day.  However, the mum who told me to try not to cry knew how often Tyger was going to be attending and her own daughter is doing similar hours.  I also don't think I'll feel any different when it comes time for Tyger to start school.

Perhaps I'm just more heartless?  Or - maybe at least - more practical.  This is simply the next step in parenting.  It should be good for Tyger and learning some independence is a positive step for a child.

It might also be Tyger.  Of course I feel the same unconditional, totally staggering love for the cubs most parents feel for their children...but Tyger is hard work.  Really, really hard work.  Tyger's ASD makes simply being near him completely overwhelming at times.  Whilst he's loving and intelligent and funny and thoughtful he's also a violent, unreasonable, unpredictable wall of sound.  Spending all day, every day, with him is exhausting and I am more than looking forward to having a couple of breaks a week from him.

I think his ASD also highlights something for me that parents of neurotypical children might not get.  The health care professionals who have been assessing Tyger have used words and phrases like 'subtle' and 'end of the spectrum' to describe his ASD and I think it likely he'll end up with a diagnosis of Asperger's (since this is still used in parts of the UK).  So, Tyger's chances of leading a relatively 'normal' life and going on to live independently are reasonably high.

High.  But by no means guaranteed.  I don't know how Tyger will cope with school in a year's time.  I don't know if he'll make it through secondary school with much in the way of qualifications and how often he'll even manage to attend.  I certainly don't know whether he'll be able to hold down a job and move away from me and the Wolf.  So, the fact he's excited about going to preschool and the staff have been so amazingly understanding and proactive about his autism - even without yet having a formal diagnosis - is something I can only see as a good thing.

Or maybe I'll be in floods of tears tomorrow after dropping him off.  I guess we'll find out!

Linked with:

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.

Linked with:

Poo You!! (Are ASD Parents Too Sensitive?)

Tyger has been lining things up a lot recently.  It's an ASD thing and something he's always done but he's doing it far more right now, especially with his cars.  Perhaps it's a coping mechanism because he knows there's change coming (he will go to preschool after the summer) or maybe I'm just noticing it more at the moment or it might be he's already forging a future career as a...parking attendant or something.  I don't know.

Yes, that's a door in the background and no, we were not allowed to move the 'traffic' away from the door...

This week, at a toddler group, Tyger diligently lined up all the ride-on cars and the toy buggies along the edge of the room.  It was pretty conspicuous so I briefly explained to a couple of the other mums about Tyger's compulsion to line things up.  They know he's being assessed for ASD.  One of the mums just smiled and mentioned her own son's phase of lining things up.

I immediately felt defensive.  Defensive and a little...belittled?  I thought about Tyger's concentration as he lined up perhaps 20 or so cars at home and then his distress if anyone tried to move them.  I thought about all the different things he lines up (cars obviously, blocks, CDs, toy animals, his Henry Hoover collection, buckets, trains...) and how long he's been doing it (probably about a year now).  I know a lot of toddlers go through a phase of lining up when they're learning to categorise the world around them but it's not really on the same level.  This is probably where a lot of people would use a sports metaphor and talk about...leagues?  But I don't do sport.  I guess it probably felt like someone who's been out on a pedalo a few time comparing himself to the captain of a ship.  Except that makes it sound like I think this little boy was an amateur liner-upper whilst Tyger is an expert and that's not what I mean.

Anyway, the previous week something similar had happened.  After watching another boy who was playing with a doll in a buggy, Tyger found another doll and another buggy and wheeled them over to the other boy so they stood next to each other.  I mentioned the fact Tyger often very closely imitates other people to the boy's mum and she said she thought all kids do that.  I know all children copy to some extent.  I know if one child decides to play with the train track you're far more likely to get others suddenly showing an interest in the train track.  And children love cleaning 'just like Mummy and Daddy' (haha! I avoided the trap of just putting 'Mummy' - how many feminism points do I get?); unfortunately, they don't do it well enough to take over all cleaning duties (I know - I've tried).  I know kids often pick up phrases they've heard from adults (normally either ones that sound massively cute coming from a child or - more likely - hugely inappropriate phrases that you just said that one time and why did they have to pick up on that specific phrase out of all the things you say!).

But Tyger doesn't just do a little copying here and there.  He'll watch someone intently and imitate everything about them.  If they have a backpack on, he'll get his own (or - if they have a buggy!).  If they're sat with their hands in their lap, he'll sit with his hands in his lap.  If they walk away, he'll walk along right next to them (think shoulders touching).  When they speak, he repeats wheat they've said in the same tone of voice.  He does this a lot.  In fact, it's a huge problem with his interactions with Baby Bear.  Tyger often copies Bear (babbling, chewing on things, maybe crawling) and does it so close to Bear he's pretty much on top of the poor child.  As you can imagine, Bear is less than thrilled to have this limpet stuck to him at all times.

When someone says they think all children are like Tyger, it feels like Tyger's struggles are being downplayed.  I feel like shouting 'poo you!!' sometimes (which is something Tyger said to the Wolf the other day when the Wolf was teasing him and it tickled me).  But I know nobody's trying to make me feel bad.  I know the other mums almost certainly aren't trying to insinuate I'm exaggerating or even lying about Tyger's ASD.  I imagine they either don't even think about it at all or - if they do - are trying to be supportive by suggesting Tyger is still 'normal' despite his ASD.  I doubt there's any malice there.

Why do I feel so defensive?  Well, I think there are probably a few reasons.  For one thing, I always feel a little defensive when it comes to Tyger.  When your kid decides he absolutely needs to roll around on the floor when you're out, or when he has a meltdown and starts kicking as you pick him up and you can feel the eyes on you and hear the thoughts, it can make you defensive.  When the first few health care professionals you mentioned ASD to, were completely dismissive because your child 'makes eye contact' it can also make you defensive.

I don't tell anyone to go poo themselves (wow, maybe the 'poo you' insult doesn't work as well as I thought...or maybe it works a little too well and too...disgustingly) but I do feel like it.  I don't think it's at all unusual for an ASD parent.

I have also read a lot recently from parents of kids with ASD and adults with ASD who say they are offended by so many terms.  Some dislike the term 'on the spectrum' because there is confusion over whether 'the spectrum' refers to just the autistic spectrum or the whole lot ranging from completely neurotypical through to very autistic (it's the former - I checked!).  And then you get people saying 'everyone's on the spectrum', which (as I now know) is certainly not the case.  So, the whole concept of a spectrum can be problematic but that's not all.

Other members on these forums don't like 'autistic' as a term because autism is not something people are but something they have (if it seems like I refer to a disproportionate number of conversations that take place online rather than in real life that's because most of my conversations in real life are with people I'm related to - I suspect if I worked out which adults I spend the most time actually talking to the postman would easily feature in the top 10 (and that isn't hyperbole for comic purposes...just the truth for comic purposes)).  However, others actually prefer to be called/have their children called 'autistic' rather than using the phrase 'has autism/ASD' because it is a part of them and not something to be ashamed of.

That doesn't even touch on the controversy surrounding terms like 'high functioning', which some people find useful and others find pretty offensive because the opposite of 'low functioning' has such negative connotations.  Also, 'high functioning' suggests the child is not overly affected by ASD when actually a child who is very capable in terms of language, academic ability etc. can still be hugely negatively impacted by ASD and struggle daily.  'Asperger's' is no longer used as a diagnosis in the US and its use is inconsistent in the UK.

I have even recently learned some people resent the term 'ASD traits'.

Confused yet?  I am and I think I know more about the subject than your average person.  I'm afraid of offending when it comes to discussing ASD.  I'm afraid these blog posts often have scope to offend...which makes me think I should go easier on those who unwittingly offend me.  You know what, don't poo yourself!

Am I Being Paranoid?

I write a lot about Tyger and less about Baby Bear.  I have written in a previous blog post here about the fact I'm not a baby person.  Generally toddlers/preschoolers are better sources of amusing anecdotes than babies, too.  I may like to talk at length about how my baby has learned to clap or about explosive nappy incidents but I am aware of the fact these conversations are boring and/or disgusting for other people.  An account of a conversation with Tyger about how outraged he is his hot cross bun isn't hot will always be funnier than an account of how Baby Bear can give high fives.  Plus, although I didn't plan it as such, this blog is largely about ASD and Baby Bear isn't autistic...is he?

Prepare to hear - or read, I guess - more about Baby Bear over the coming months/years/however long I carry on this whole blog thing.  'Baby' Bear is technically not a baby anymore and he can walk and climb and did I tell you he can clap and give high fives?  And with his growing abilities is coming a growing suspicion of mine.  Is my little bear cub actually more of a tiger cub?  Does Baby Bear, in fact, have ASD?

With Tyger, it really wasn't something I'd ever considered until after he'd turned two and I was actually talking to my mum about someone else's suspicion their child had Asperger's.  My mum's advice was to make a note of all traits he displayed because if they tried to get a diagnosis later on it would be incredibly useful to have this stuff written down (instead of trying to remember whether their child walked on tip-toes as a toddler or pointed to things to draw attention to them at a year old).  I - half jokingly - said I should make a note of any traits Tyger had since ASD runs in the family just in case.  I started writing them down - assuming I'd manage three or four bullet points - and several pages later I was still going.

This time is very different.  I've been on the look out since around the time I suddenly realised Tyger has ASD.  Baby Bear was probably about six months old.  To start with I was pointing out all their differences and how he couldn't be autistic.  'Tyger used to look out the window when he was getting his nappy changed but Bear loves giving lots of eye contact.'  'Bear is always on the look-out for faces like a normal baby.'  'Bear is a much jollier baby than Tyger ever was - is this what it's like to have a neurotypical child?'

Was it some sort of vain hope that he wouldn't be autistic?  Or was it simply that humans are good at noticing differences so the differences between the two boys stood out and overshadowed any similarities?  Not that them being different even precludes them both having ASD.  It is, after all, a spectrum and no two autistic people have the exact same traits or personalities.

It was Bear's reaction to food that first kindled my suspicion.  We started off doing 'Baby Led Weaning' with him, which basically means we shoved normal food on his highchair tray and let him get on with it rather than the purees and spoon feeding we did with Tyger.  And that was fine.  Messy but he seemed to do quite well with it.  Sort of.  The problem was Bear was really funny about certain textures.  Every item of food placed on his tray had to pass the prod test.  He bunched his fingers up together - kind of like if you pretend to hold a pencil so all the tips are together - and then he'd prod at the food.  If the texture was wrong it was unceremoniously flung to the floor without ever going near his mouth.  Anything even slightly slimy was discarded (banana, mushrooms, pasta).  If it was in anyway rubbery (boiled egg, certain cheeses etc.) that was also entirely unacceptable.  Foods with sauce were - literally - off the table.  But, hey, part of weaning a baby onto food is getting them used to new textures, right?  Except, it meant he didn't even try a large percentage of the food we offered him because he couldn't bear to touch it.  So...after persevering for a while I gave up on the whole 'Bably Led Weaning' thing and started spoon feeding him any foods he wouldn't touch.  Ah well, parenting is all about figuring out what works for your child so that's okay...isn't it?

He also did the prodding thing with toys and anything he came across.  Texture has always been very important to him.  These days he prods things with one finger instead of his strange pencil grip.

Then there's the sleep and stomach business.  Sleep is often a huge issue for people with ASD and children all the more so.  There are kids with ASD who only sleep for two hours a night (which is one of the many reasons you should be extra nice to parents of ASD kids - there's a good chance they've had less sleep in the last month than you've had in the last week).  I'm relatively lucky with Tyger.  He has sleep issues.  He especially hates the transition between sleep and being awake so will start kicking his legs and fidgeting around when he feels his eyes getting heavy to fend off the inevitable.  Every time.  As if, after hundreds of times of it not working, if he just tries hard enough this time he'll manage never to fall asleep again.  Then, at the other end, he also struggles because waking up is another transition.  Tyger napping is a rare and mixed blessing because he cries and cries and cries upon waking.

Hang on, this post was supposed to be about Bear, not Tyger.  Okay.  So, I have written about Bear's sleep issues before.  It is finally getting better.  I was assured by many people his sleep would likely settle down after those first few growth spurts as a baby...it didn't.  Then, I was told he'd almost certainly start sleeping through when he started on solids...he didn't.  So, everyone consoled me with the fact he'd be tired out once he was crawling...he wasn't.  But, those people who said he just might start actually sleeping more than a couple of hours at a time once he was walking...were thankfully right!  He now tends to sleep 8pm-6am.  And it's fracking wonderful.  But all those sleep issues...well, like I said, sleep is often a problem for those with ASD.  And a lot of the sleep problems he had seemed to be linked to stomach problems and...yeah, you guessed it, stomach problems are also very common in people with ASD.

But lots of babies have sleep issues.  Just go onto any parenting forum and look at how active the sub-forum for sleep is (and there will be one) to confirm that.  Or check Facebook to see how many parents write updates along the lines of, 'Whoever came up with the phrase 'sleeps like a baby' obviously didn't have a baby!'  (Or some 'real world' example.  Perhaps I spend too much time on the internet.)  So, poor sleeping habits doesn't necessarily point to autism...

Then, there's the shoes.  I went to get Baby Bear his first pair of shoes at the beginning of the week.  He's walking confidently now so it seemed the time.  I also needed to get Tyger some canvas shoes because he has taken against his sandals and thick leather shoes seem a little inappropriate for the hot weather we've had (though, since he likes to put on his wellies in any weather and run outside in them - and only them because he doesn't do clothes when we're at home - clothes and leather shoes are an improvement, I suppose).  I must say, we were very lucky to be served by a lovely sales assistant who managed to find me shoes on sale for Bear (£10 instead of the usual £30-something) and was very patient and nice with Tyger even when he was running riot taking shoes several sizes too big for him off the pegs and trying them on.  The fact Shoe Shop Guy was approving of Tyger having long hair, wearing nail varnish and showing an interest in shoes with hearts on despite the shocking fact he's a boy and that the guy enthusiastically told me how nice it was to spend time with such a bright little boy made him my favourite person of the day.  If we hadn't been in such a rush to wolf down some lunch before a hospital appointment I would have found the store manager and praised Shoe Shop Guy to them.  (Maybe I should phone the store and do it anyway.  Except it's been like a week now and I'm crap at remembering what people look like and didn't take a note of the guy's name so the call would consist of me saying, 'So, there was this young man working in the children's department of your shop on Monday and I just wanted to let you know how helpful and nice he was.  I don't really remember much about him except he was very friendly and complimented my children so if there's someone in the store who fits that description...it's probably him.'  Hmm...it might be a little weird and awkward and I hate speaking to people on the phone anyway...)

Anyway, Baby Bear did not like having his feet measured at all.  I don't know if it was the stranger touching him thing or the sensation on his feet or both but he was unimpressed.  That was nothing compared to actually trying to get shoes on his feet, though.  Unfortunately for Bear, he takes after me in that he has very wide feet with a very high instep.  Couple this with the fact he's a pretty chubby little guy and his feet are practically the same width, height and length.  This makes finding shoes to fit difficult and once poor Shoe Shop Guy found shoes in the right size Bear was not about to make things easy for him.  He scrunched his toes up so his feet were like two balls and pulled his leg away every time it looked like Shoe Shop Guy might actually have managed to squish Bear's feet into the shoes.  Once the shoes were finally on, Bear refused to stand in them, let alone walk.  In fact, it took a couple of days before he started walking in them and he still often sits down and pulls at them in a disgruntled way.

But it's pretty common for babies and toddlers to dislike shoes.  All of these things are normal in toddlers and - as I pointed out at length in this blog - everyone has some autistic traits.  Then again, it's the very fact everyone has some traits that can make figuring out whether a kid has autism so hard.

And there's more.  Bear likes banging the back of his head off doors/walls/his highchair, shaking his head vigorously, pouring water all over the place.  He gets really angry and throws huge tantrums when he doesn't get his way (like little-rage-monster angry not a-bit-of-screaming-and-crying angry).  He echoes things - the general tone and sound of things people say - even though he can barely say any words.  He is sensitive to noise.  The list goes on.

He also has a cuddly toy dog we call Fergus, which he has to have when he goes to sleep, grabs when you take him out of the cot, clings to in the car and generally seems pretty taken with.  They've stopped selling the dogs in the shop it's from but I bought one off eBay this week so we have a replacement just in case.  I know, I know, loads of kids have a favourite toy.  But the only one I've actually known who's had one to this extent this young is my sister.  Yeah, the sister with Asperger's.  So, it's just another little tiny possible trait...plus it gives me the chance to post this photo:

Can you tell which is the manky old one well-loved one?

There's nothing definitive and nothing I'd have picked up on at all if it wasn't for Tyger so maybe I'm being paranoid.  Or maybe not.  I don't know.  My gut says I have two little aspies but I'm by no means sure.  I know Tyger has ASD.  Regardless of how long it might take to get an official diagnosis I'm as sure of it as I am sure he's my son.  I am not so sure with Bear.  I accept I may be seeing autism where there isn't any, like people who see Jesus' face in food, but I'll keep an eye on it.  Maybe my list of a few bullet points will grow to six or seven pages like Tyger's...or maybe not.  Watch this space.

Relying on the Kindness of Strangers

Tyger has a cyst under his eye that's been there for weeks now.  This has involved quite a number of trips to both the GP and the eye clinic at the hospital.  Lots of waiting.  Lots and lots of waiting.  Preschoolers are not known for their ability to wait quietly and patiently at the best of times and preschoolers with ASD in noisy, unfamiliar surroundings...even less so.

I try.  The first time we went to the eye clinic was after yet another trip to the GP resulted in a referral for later the same day.  Between allowing extra time in case of car sickness, the GP ballsing up the time and telling me the appointment was an hour earlier than it actually was, some confusion between the receptionist and nurse, and a 40 minute wait for a prescription at the hospital pharmacy we ended up waiting around for over two and a half hours.  That's a long smegging time for an adult to be hanging around with nothing to do, let alone a small child!!

I had not planned for such a long wait.  I had a few toys and snacks for both the boys in the changing bag and my mum was with us but even so it was hard.  Tyger was distracted by a little notepad and pen set I had in the bag for a while and did cicuits of the waiting room but by the end I had to carry him round restraining him.  My neck, shoulders and arms ached the next day.  Want an unusual workout?  Try carrying and restraining a tired, bored, frustrated autistic kid for a while.  Except, you know, don't.  The child's parents will probably call the police.

Okay, so that was an unexpected one-off type of trip.  Next time the Wolf worked from home so Baby Bear could stay with him whilst my mum took Tyger and I to the hospital.  I prepared.  I looked for inspiration online and got creative.  I used an old DVD case as a carrier for paper and stickers and pens.  I made a 'hide and seek bottle' where you fill a plastic bottle with rice and then a load of random stuff (buttons, tiny toys, small bits of cheap jewelry, beads, whatever interesting stuff fits in) and then the child has to shake and/or turn the bottle to make all the stuff appear out of the rice.  I also stuffed a balloon with homemade playdough for a sort of squidgy stress ball type thing.  Some proper Pinterest parent type of shit!  Plus, I packed his backpack with a packed lunch and some of his toys (a few of them brand new since this appointment directly followed his birthday) and I took some books.  I felt pretty good about it all.

(Maybe I need more wood and glitter before I could put this on Pinterest but it's functional.)

The DVD case and bottle kept Tyger entertained for all of about five minutes combined.  He refused to so much as acknowledge the books.  He wanted to eat the chocolate biscuits from his lunch first and refused to eat his sandwich when I told him that needed to be eaten (lesson learnt there - don't let him see the treat elements of a packed lunch until after the boring stuff has been consumed) but still kept declaring he was 'soooo hungry' at every available opportunity (of which there were many).  He barely looked at most of his toys.  The only things that kept him remotely entertained were his Thomas trains and the balloon filled with playdough.  Oh, and a couple of nice ladies who were in seats opposite us and didn't mind him talking at them.

But that's okay because we were there at the right time on this occasion and there were two adults to just the one Tiny Tyger.  No problem, right?  Ha.  We still had to wait an hour for our appointment because of the triage system at the eye clinic and neither my mum or I could keep him interested in anything for very long.  So, he spent a large amount of time lying on the floor in the pretty large and reasonably busy waiting room, rolling around.  It was pointless trying to stop him.  It would only have resulted in lots of screaming and probably some hitting and scratching (directed at me or himself) and he'd almost certainly try to run away.  Every time someone needed to walk past I dragged him across the floor out of the way (which was a source of much amusement for Tyger - less so for me).  I got some looks.  I ignored the looks.

Then, an elderly lady took pity.  She came and sat down near us and started asking Tyger about his trains.  She explained her grandson liked Thomas and asked Tyger which was his favourite.  (Interestingly, Tyger normally makes quite a nuisance of himself with strangers.  He likes to talk to them, order them around, tell them off, climb up next to them etc.  But this woman instigating a conversation with him elicited silence and sideways glances for quite a while before he seemed to build up the confidence to answer.  Evidently, interactions have to be on Tyger's terms.)  I wanted to hug that lady.  Well, I don't really like physical contact with strangers so I didn't actually want to hug her but you know what I mean.

The last time we went to the hospital I didn't try to be Pinterest Parent; I resorted to videos on a tablet.  Yeah, that's right, I was that mum but I thought better that than the mum of the kid rolling around on the floor.  The Wolf ordered him kid's headphones so we wouldn't disturb the entire waiting room with the sound of cartoons and everything.  Tyger didn't like the feel of the headphones.  He watched on and off for about half an hour whilst continuously taking the headphones off and then asking me to put them back on him again...but still ended up doing some rolling around on the floor.  Nobody spoke to Tyger except one man who commented on his Thomas t-shirt and bag on our way out and gave Tyger a high five.  Tyger was pretty chuffed with that.

We have yet another hospital appointment this coming week (because the 'wait and see' approach is not just reserved for ASD diagnoses but for anything regarding children, it would seem).  I'm running out of ideas to keep Tyger occupied.

So, what am I saying?  Am I ordering you to entertain every child you see in waiting rooms, on public transport, in shop queues etc.?  Maybe even to carry around juggling balls - and put in effort at home to learn how to juggle - at all times, just in case?  No, of course not.  Although...no, that's probably unreasonable.  All I'm saying is it can be very daunting for me taking Tyger out.  I know he might try to bolt out of the blue, he might suddenly decide he needs to take his shoes and socks off in the middle of this corridor, he might refuse to get up off the floor because he has some sensory need to roll around, he might find the noise when we're out overwhelming and start screaming to drown it out.  Trying to anticipate and respond to these behaviors is exhausting.  But the worst part is - whilst I'm trying to talk him up off the floor like some cop in a film talking a jumper off a roof - I'm hyper-aware of everyone around me looking and judging.  It makes it all much more stressful.

All I'm asking is you be a little understanding.  If I let Tyger climb up on a chair next to you and start talking to you about your glasses it's not because I can't be bothered to parent my child, it's because I can tell if I move him away he'll start screaming and kicking and I judge that to be more unpleasant for you (and the whole waiting room) than having a small child chat to you for a few minutes.  If he runs round a shop with me trailing after him, desperately making sure he doesn't break anything or get in anyone's way it's not because I don't discipline him.  It's because, again, keeping him in one place would mean a much higher likelihood of something being broken.  His brain does not work in the same way as neurotypical people's and that's not his fault.  It's also not my fault, though it often feels like it is.

I have become much less judgmental, myself, in the last three years.  Maybe that mum letting her child drink half a bottle of Coke is a bad parent who feeds the poor kid a diet of nothing but sugar and fat because she doesn't care about her child's health.  Or maybe her child is diabetic and she's merely trying to correct hypoglycaemia so the child doesn't lose consciousness.  Maybe that dad didn't put shoes and socks on his toddler's feet even though it's snowing because he couldn't be bothered.  Or maybe he did diligently put cosy pairs of both on and the toddler - as toddlers are want to do - pulled them off and threw them out of the buggy and nicely drawing the dad's attention to said toddler's feet rather than sighing loudly as you walk past is more helpful.

What do people think their looks and tuts and comments are going to do?  If these seemingly awful parents truly do not care, disapproval from a stranger is unlikely to change that.  It might make the tutter feel a little superior for a while but that's about it.

You know what also makes you feel good about yourself?  Showing a little kindness to someone.  A smile, instead of an eye roll.  Saying 'hi' back to a little boy when he says 'hi' to you instead of blanking him.  Answering his questions.  Giving a little reassuring nod instead of a glare.

Any of those small kindnesses make my day (and Tyger's) a little bit easier.