What If We Didn't Know?

Baby Bear has come on leaps and bounds with his communication even since I last wrote about it a couple of weeks ago.  In fact, even since yesterday!

The Wolf is outside with Tyger enjoying the sun.

Things are good.  Right now.  At this very moment.  And, see, that's the thing: I don't expect it to last.  I don't mean in the long term or for the whole week or even the whole day; I mean right now things are good but in 30 second's time that could change dramatically.

That's the reality of living with any children, I know, but especially when autism is involved.

Yesterday morning things were going pretty well and the cubs were both relatively happy.  Both struggle with the transition from sleep to wakefulness so mornings can involve a lot of seemingly baseless tears (or maybe a breadstick breaking in half or me shifting half an inch to my right really are on a par with a serious injury) but all was calm...until Tyger decided he needed (not wanted, needed) to use the DVD player remote as a phone.  I explained he couldn't because we needed to know where the remote was, couldn't have him pressing buttons on it and he already had lots of phones to play with.

So he ran at me and headbutted me in the chest.

Later on, the Wolf and Tyger were play-fighting and messing around with foam swords.  It's normally great for me because it burns some of Tyger's seemingly endless energy (the energy he normally expends running off to rooms he's not allowed in, rolling around on the floor and kicking his brother, reaching things he's not allowed and having meltdowns)  This time, however, the game ended when - out of nowhere - Tyger gauged the Wolf's forehead.  As in, it broke the skin and and the Wolf has a nasty big scratch.

I know kids will be kids but when your three year old repeatedly kicks his little brother or wraps himself up in a curtain or pushes his brother or throws heavy toys or hits his brother or chases the cats or chases his brother or smacks the window or...you get the idea...after being told off/being taken away/had toys confiscated (and by repeatedly, I don't mean he'll do it again at some future point but will go straight back to it immediately) until I have no choice but to physically stop him, at which point he'll scratch/pinch/kick then it's not just usual three year old behaviour.  He'll keep going with the acting out and violence until it hits a point where he just breaks down and screams and cries and scares himself (he has - during these meltdowns - managed to force out the words 'help me' between wailings and sobs and it's pretty heartbreaking).  With such a great vocabulary and advanced problem solving skills it's very easy to assume he knows what he's doing and think he should 'know better'.  It's easy to come to the conclusion he's just 'doing it for attention'.  I find myself saying, 'why do you do this?' even thought I know why.  I know he has ASD.  I know he has sensory problems completely different to his neurotypical peers.  I know he acts out because he's actually really fracking anxious.  I know he can't really help himself.

I know.

What if I didn't know?  Many people look at Tyger and find it hard to believe he's autistic.  Even the professionals I've seen who agree with me are quick to call his ASD 'mild' and 'subtle' and 'on the end of the spectrum'.  If my sister didn't have a diagnosis would I ever have suspected?

How many families are out there right now with their own Tiny Tygers just struggling along without understanding why their child who they love and try their absolute best with just seems so alien to them?  How many parents are blaming themselves and assuming they've failed their child?  How many are going to GPs or health visitors to be told there's nothing wrong, even though they know something's not right?  How many are accused of 'indulging' their child and making them naughty?

Even more frightening: how many parents are out there right now blaming the child?

These questions upset me.

Sometimes I feel like I'm failing Tyger.  I lose my temper, I shout, I stick him in front of the TV or his laptop when I just don't know what else to do with him.  But I'm trying.  At the moment, I'm building up a collection of sensory tools for him.  It's a start and it makes me feel like I'm being proactive and when I think about all the parents out there with children on the spectrum who have no clue, I think I have an advantage.  Tyger has an advantage.  We'll get there.

I've commandeered his spaceship to use as a sensory room.

There are a couple of soft Henry Hoovers for throwing/squashing.

A Henry bin full of fiddle toys/light toys/fabric/biting toys etc.

Ear defenders and sleep mask for sensory overload.

A beanbag for rolling around on.

I know this post has been a little less humorous than usual so in case it's been a bit too depressing, I can assure you there are upsides to living with an autistic child.  Yesterday we were in the garden and my mum started up the ride-on mower (we currently live with my parents - I don't make my mum come round and cut the grass at our house!) and Baby Bear went mad.  He didn't have a meltdown or start crying but he started shouting at the mower.  He was shouting to the point where he was shaking with the effort!  Of course, Tyger joined in shouting gibberish because he's a little mimic and the Wolf found this all amusing.

Wolf: 'That's right.  You tell that mower off.'

Tyger: 'Off!'

He does take things very literally.  Bless him.

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Am I Autistic?

My family have joked about getting my mum a t-shirt with the words 'I See Autistic People' printed on it.  You know, like the whole 'I see dead people' thing in The Sixth Sense?  I don't know how popular that film is these days - does that reference need to be explained or is it still obvious?  I'm not really good at keeping up with popular culture.  You know what: I feel like that film gets a bad rap these days.  I still like it.

Nineties Bruce Willis films aside, after my sister received her diagnosis my mum started to analyse everyone she knew for signs of ASD.  It's not uncommon.  I find myself doing the same these days and I'm sure other people do it too.  There are people like my dad who - once you know about ASD - are obviously autistic (I don't think he'll mind me pointing it out).  Back when he was a child they didn't diagnose such high functioning individuals so he has no official diagnosis but there is no question about it: my dad is as autistic as my sister.  However, there are also a lot of people - especially in my immediate family - who have a lot of autistic traits but not enough or not intensely enough to actually be on the spectrum.  Or far enough along the spectrum.  I'm not sure if the spectrum starts at 'neurotypical' and goes all the way along to severely autistic or if the spectrum only starts at the 'just about autistic'/Asperger's point.  Maybe I should look into that.

My mum has pointed out some of my ASD traits, as has the Wolf, and I've noticed others on my own.  I thought it might be worth sharing some of them.  I'll start by introducing you to the sort of...oddness I displayed at the age of four (imagine the Wayne's World style wibbly wobbly effects as I take you into a flashback if you like).  When I started school my mum was concerned about her daughter fitting in and asked me who I played with at break time.  I told her I didn't play with anyone, I just sat on the wall and ate my apple by myself.  Poor Mum was distressed by the thought of me having been bullied or shunned but it turned out I chose to distance myself from the other kids at this time every day because you can't eat an apple whilst you're running around and apparently those other children were 'silly'.  Yes, at the age of four I thought other children wanting to run around and play at a time that was clearly better suited to sitting and eating a healthy snack was 'silly'.

Want to know another adorable, not-at-all-creepy thing I did as a child of a similar age?  I'd go up to strangers - mostly little old ladies - at the meat counter in the supermarket and say, 'You shouldn't eat dead animals!'  Oh yeah, I'm vegetarian.  In case that hadn't come up before.  That's kind of important to the whole anecdote...maybe I should have mentioned it first.  Anyway, I have no idea where Tyger got his social inappropriateness from...

Oh, and the reason I had an apple at break every day was because the school had a 'fruit only' policy on break time snacks and apples were pretty much the only fruit I'd eat.  Sooo, I might moan a lot about Tyger's fussiness with food but I'm not the easiest person to cater for, myself.  I'm a vegetarian who doesn't like onions, tomatoes, peppers, aubergines or leeks (and that's just the beginning).  Considering most restaurants seem to think people only become vegetarian for the love of these particular foods, eating out is difficult.  There's a mix of taste and texture issues, I'm sure.  I haven't really given much thought as to why I don't like certain foods, I just try to avoid them as much as I can, but I'm pretty sure it all counts as a sensory problem.

Another sensory issue I have is sensitivity to sound.  I don't mind having reasonably loud music on if I'm not talking to anyone or doing anything more than perhaps reading or messing around on the internet (basically, my 'hobbies' pre-kids).  But as soon as someone tries to speak to me I want all background noise to be way, way down.  The Wolf used to put a film or something on the TV whilst also playing on the computer and then would also talk to me and I wanted to shout at him, 'What are you doing, you maniac??  Why are you assaulting our ears like this?'  And after a film finishes when you're at home, why doesn't everyone immediately turn down - or preferably mute - the sound once the credits start?  It's like a physical presence.  Don't get me started on the hell that is the sound of someone sweeping concrete!  Gives me goosebumps just thinking about it.  And as for speaking on the phone...well...

I hate making phonecalls.  Hate, hate, hate it.  And if I do have to - you guessed it - I don't like to have any background noise.  It's to much; I can't cope.  Why do I hate making phonecalls?  A bit like the whole food thing, I don't tend to think about the why but here goes.  I don't like talking to people when I can't see their expressions and body language; I don't like the fact that most phonecalls come with some sort of expectation (even if it's just knowing when I'm available for an appointment); I don't like the fact I might not be able to understand what the person's saying due to a bad connection, someone talking to quietly or quickly, accent etc., I don't like the fact they might ask me something I don't know the answer to.  It's mostly just not being able to see them.  I don't know why that makes such a big difference but it does.  And everyone having mobile phones has just made it so much worse.

I get social anxiety when I see people face to face as well, though not anywhere near as bad and generally for different reasons.  I obsess over whether I've said something offensive or inappropriate.  I'm constantly worried I've upset or offended pretty much everyone I ever have contact with, actually.  'Oh, Christ, when I asked how their day has been did it seem like I was being nosy?  When they asked if I'd like a cup of tea were they actually just being polite and were pissed off when I said 'yes'?  What if they were upset when I complimented them on their hair because it sounded like I normally think it looks shit??'  Even in my relatively reclusive existence there are plenty of these moments a week (or day...).

And talking of being obsessive...I get obsessed with all sorts.  There are the obvious things like TV shows, films, books, music but luckily, the Wolf - who is almost certainly further along the spectrum than I am - is also pretty obsessive so we often get obsessed together.  But then I also get obsessed with certain foods and will eat the same thing repeatedly.  Or I'll get obsessed with a topic and google the frak out of it for several days (at university I once looked after a friend's pet rats for a while when she was away and at the time I was an expert on rats because I looked up every single fact I could find about them before taking on that responsibility).

I also have some physical habits/ticks/whatever.  It seems I wipe my hands on my shoulders (the same shoulder so left hand on left shoulder and right on right).  I didn't know I did this until one day at high school I commented on the unusual level of crumbs I seemed to get on my shoulders and a friend explained why.  I absent-mindedly scratch the back of my neck to the point where it becomes scabby.  I also have a habit of pushing my fingers and thumbs back away from the nails because otherwise they feel sort of uncomfortable.  I thought this was a normal thing until I mentioned it to my mum once...it's apparently not normal.  I assume the fact I sometimes lick the tips of my fingers first for a better grip when doing it is even less normal (I understand fully if you no longer feel comfortable reading my blog, knowing how odd I actually am).

This is the tip of the iceberg.  No doubt - if my mum or the Wolf read this - I'll be asked why I haven't included the fact I have to have the eggs laid out symmetrically in the egg box and am more likely to buy eggs in boxes of 15 to more easily facilitate this, or the fact I often talk too loudly (especially on the dreaded phone), or how I'm really particular about clothing because I find so much of it uncomfortable, and so on.  I have quite a lot of ASD traits, is what I'm getting at.

So, you're probably thinking, 'but I get obsessed with my favourite TV show,' or, 'yeah, loads of people hate certain sounds,' or, 'I know some fussy eaters.'  And that's kind of the point of this blog post.  It's why it's so hard to answer the question, 'Why do you think Tyger is autistic?'  Every trait I mention could apply to loads of neurotypical people.  It's the sheer number of them, the extent of them and - probably most importantly - how much they affect day to day life that makes it ASD rather than a few quirks like everyone has.  My noise sensitivity means I get a bit irritated sometimes and I find it hard to focus when I'm in crowds.  I don't get so overloaded I can't move or I start screaming or sobbing or rocking.  My food fussiness means I have to be extra nice to restaurant staff so they're more likely to agree to modify a meal for me.  It doesn't mean I only have five foods I'll eat every day and I'll go into meltdown because two foods on my plate touch (though, I'd rather they didn't.  Come on, who wants their beans to touch their mushrooms??) or that I'll only eat pasta not only plain but also dried with kitchen roll so it's not too 'wet'.  My obsessions can be controlled - they don't control me.

Am I autistic?  No.  I have many traits but I have seen how ASD affects someone who has it and I am nowhere near that.  I can empathise to an extent but I have not lived it.

Tyger the Tiger is Being Referred

It's been several months since Tyger had his initial visit from the health visitors who employed the tried and tested 'wait and see' approach to his suspected ASD.  We had a second visit from a different health visitor a couple of weeks ago.

She was nice but almost immediately made the rookie mistake of assuring me Tyger made 'really good eye contact'.  This comes up time and time again when talking about ASD and it's such an outdated thing to focus on.  Whilst a child avoiding eye contact is certainly something to take note of, it's just one of many many traits and behaviours that could indicate ASD but certainly doesn't need to be present for a diagnosis of ASD (lots of autistic people make eye contact perfectly well).

I guess it's the same with anything people start to become aware of and talk about.  If you're actually pretty knowledgeable on the subject, you notice the misinformation or incomplete information everywhere (you know, like when you hear someone discussing Jon Snow's parentage and they don't even know about the L+R=J theory?...anyone?...no?).  I saw a thread on a parenting forum yesterday about a lady who sounded potentially autistic to me.  However, another poster assured me she couldn't possibly be autistic because she had a habit of massively overstaying her welcome and autistic people hate being in social situations so wouldn't do that.  This reminded me of when my mum initially took my ASD sister to the GP the doctor said, 'The good news is it's unlikely to be autism because she wants to have friends.'  This whole 'autistic people hate being around other people' myth is pretty pervasive but it is a myth.  It's true that the mishandling of social situations is a big part of ASD but an inappropriate social response/understanding isn't the same as hating all other people!  Of course you do get the stereotypical autistic person who just doesn't like spending time with others and prefers to spend all day every day on their obsession but you also get the ones who desperately want to spend time with others but find social situations hugely stressful, the ones who enjoy being around other people but possibly don't realise they're being inappropriate or hogging the conversation, the ones who find one person they like and just want to spend all day with that person.  It varies greatly as each one is different - almost like they're, you know, people!

Now, Tyger loves people.  He loves talking to people.  He loves saying 'hi' to people in the street...every single one of them, regardless of whether they say hi back or look at him or acknowledge him in any way.  He loves it when delivery men come to the door and will invite them in ('come in, come in!').  He loves talking to people in the doctor's waiting room and will make instant friends with some unfortunate little old lady who he'll then demand stands up and goes with him to the children's books in the corner.  He loves it when one of my sisters has a friend round and will immediately attach himself to the poor unsuspecting teenager and cry when they disappear to my sister's bedroom.  He loves people.  Except when he doesn't but that's probably another blog post.

The health visitor seemed taken aback by his forwardness and bemused by his responses to her attempts to engage him in putting puzzle pieces into the right slots.  My mum - who has extensive knowledge and experience with young children - said toddlers tend to fall into two groups when they meet a strange adult.  They are either shy and unwilling to engage or confident and eager to please (which isn't to say either group won't end up cheeky/chatty/difficult etc. given a little time to get to know the adult).  Tyger is confident and friendly...but also knows his own mind and will freely tell it to anyone and everyone.  The health visitor asked him to put one puzzle piece in the right place so he did, whilst chatting away.  She asked him to put the next one in place and he told her 'no' and started playing with the piece (it was a car) despite all her encouragement .  She asked him to point out an animal in a book and he did.  Then next time he indignantly told her it was her turn and refused to co-operate.

I don't think she knew how to take him.  I'm not sure she was convinced he has ASD but she's referring him to a child psychiatrist anyway so it doesn't really matter.  The appointment will probably take months to come through but that's fine.  He doesn't particularly need a diagnosis right now since he spends all day every day with me and I already know about his needs but since it can take years in some cases, I'd rather start the whole process now before he's at school and might actually need the support a diagnosis would give.

Not that I always find it easy to support his needs.  For instance, Tyger has sensory issues and one of the ways this impacts on him is he doesn't like wearing clothes.  In particular, he doesn't like wearing jeans.  I think the restrictive nature of them and the waistband are uncomfortable for him.  I'd let him run around naked all day if I could.  I like to think I'm a pretty liberal parent and nudity isn't a big deal - or it wouldn't be if Tyger could leave...himself alone.  I know, I know, it's totally normal and natural for kids to do some 'fiddling' and the like.  As I said, I'm open minded.  However, Tyger will play with his penis until it's red and inflamed.  He also started trying to put various things up his bottom.  Now, I know he's my first but I'm pretty sure the 'let them explore their bodies' attitude only applies so long as you don't think doing so will lead to a trip to the GP (which it did) or possibly A&E.

So, for now at least, clothes are a must.  But the fight of trying to get them on him in the morning and back on him after every toilet visit was tiring and he also learnt if he claimed he needed the potty he could take his trousers and pants off then run away (we're in the UK so 'pants' are always underpants, not trousers).  I tried jogging bottoms instead of jeans but whilst Baby Bear can only wear jogging bottoms because jeans are too tight to get over his huge thighs, Tyger is too skinny for jogging bottoms and they just fall down (the drawstrings on his age range seem to be decorative only and aren't functional - I can only assume this is due to fear of strangulation, which is probably also why you can't get mittens on a string anymore now I think of it).  Dungarees caused more problems than they solved because he got very stressed out by the buttons.

He doesn't mind his onesies at night, though, and often asks to wear them instead of clothes so I had an idea.  I didn't really want him wearing the ones he has for night during the day - partly because they're quite thin and since he also refuses to wear socks he'd likely be cold and partly because I want a distinction between what he wears in the day and the night to help with a sleep association.  I had a look on Amazon and eBay (I'm sure there are other places to purchase things but their existance has slowly faded from my memory) and found a fluffy tiger onesie.  The fabric was similar to a Frozen blanket Tyger has, which he loves.  He especially love to lie on the blanket when he doesn't have any pants or jeans on and...well he really likes it.

The tiger onesie arrived and we were both excited I got him undressed and put the onesie on and...he went mad and told me he wanted his clothes on.  After making a fuss about his jeans for frack knows how long, he was begging to wear them and refused to wear the nice soft onesie with no waistband.  This sort of thing comes up a lot.  Later, after leaving the onesie lying around for him to get used to (like how you introduce a new cat to an existing one slowly and a bit at a time) he said he wanted it on..woohoo!...over the top of his clothes...ah.  I couldn't help but think this was defeating the whole point of the thing and was ready to write it off as a failure but I think he gained encouragement from everyone's reaction to how cute he was and the next day he allowed me to put it on him with only pants underneath.  The Goram zip was a bit scratchy on his chest, though, so I had to add a t-shirt as well.  And that's what he's been happily wearing for two days now: pants a t-shirt and his tiger onesie.  No fights after the toilet and he actually brought the onesie to me this morning when he got up so I could put it on him.  I've ordered a Gruffalo one in similar fabric but I'm a bit worried about how I'm going to wash the tiger one before it arrives.  Evening laundry, perhaps.  Or...I don't know.  I'm sure cleanliness is overrated.