Am I Labelling My Son?

A couple of conversations I've had recently have made me consider the issue of whether seeking a diagnosis in young children for things like ASD, ADHD, ADD etc. is 'labelling' them and should be avoided if possible.

I think parents worry because there's still such social stigma surrounding autism (I'll talk about this in terms of ASD just because that's what Tyger is being assessed for but it could easily apply to other disorders) and they don't want their kids to be pre-judged.  From my extensive research (by which I mean browsing on parenting forums and reading blogs) I'm guessing there are three types of judgement they're worried about.

Firstly, there's the 'Maybe we won't invite the autistic kid to little Jimmy's birthday party in case he flips out and brains one of the other kid's heads on the slide because that's the sort of thing they do - even though I know they can't help it, bless them - and I also hear they multiply when you get them wet so best not to bother' brand.  Basic ignorance.  Not necessarily malicious but obviously damaging all the same and when it's your kid not getting invited to parties even though you know fine well he's never smacked another kid's head off a slide, I imagine it's heartbreaking.

Secondly, I'm sure parents are worried about other children and how they might treat a kid diagnosed with autism.  Kids pick on each other because they wear glasses, are overweight, have the wrong clothes etc. so why add a shit load of fuel to that already potential bonfire?

Thirdly, there's the king of moron who thinks (or if they're incredibly rude morons - which is a common subset of moron - actually says) something about how diagnoses of autism has risen along with a decline in discipline and nine times out of ten supposed 'autism' is just an excuse for bad parenting.  I won't bother explaining why that's a really stupid and uneducated viewpoint to have because that's a blog for another day and if you have that particular opinion: 1) there's plenty of articles and other people's blogs on the subject on Google, 2) you're probably not open to changing your mind because of pesky 'facts' anyway and 3) why the hell are you reading my blog?  Frack off.

The thing is: getting a diagnosis doesn't make your child autistic.  Sometimes it seems like parents of undiagnosed kids think of them as Schrodinger's Aspie; like until an actual diagnosis they both are and are not autistic.  The truth is if they have ASD, they have it whether or not they actually get diagnosed.  I could decide not to get a diagnosis for Tyger in case it affects the way people see him but he'll still obsess over hoovers to the point where he cries when a hoover advert comes on TV because he 'needs' it (yes, that happened), he'd still give any stranger who walked in the house a hug (whilst naked) and scream when they left because they're his 'best friend', he'd still refuse to eat any food with blemishes, he'd still start up a long wail to drown out other noises he doesn't like, he'd still want plain spaghetti for every meal every day...and people notice these things.  He doesn't have a diagnosis but that doesn't change his behaviour and without an explanation they may write him off as 'weird' or 'naughty'.

And I think the same goes for other children.  Children are not stupid.  They recognise when someone is 'other' and, yes, unfortunately that someone is often punished for it.  But children also aren't necessarily cruel - as much as the saying indicates otherwise - and whilst some will pick on the 'weak' they will do that whether a child has a diagnosis or not and a diagnosis might just make some of the kinder kids more understanding and sympathetic.

That covers other people but I'd guess parents also worry about what the kid will make of it and whether it will make them feel ashamed or upset to know they're autistic.  My sister was a teenager when she was diagnosed with Asperger's so she fully understood having it made her 'different' and may open her up to a load of bigotry and ignorance from other people.  She was - and still is - at an age when social acceptance is a top priority for most people.  But far from being upset by the diagnosis, she was relieved.  She's a smart girl: she already knew she was different to most other people and she found it baffling.  All the diagnosis did was explain why she was different; why she was obsessive and anxious and struggled in social settings.  It also - importantly - meant she received a whole new level of support at school.

I have experienced something similar, if not as pronounced.  I'm not on the spectrum (at least not far enough along it to be diagnosed) but I do suffer from depression.  It's not the same thing but it is afflicted with a lot of the same social stigmas and misunderstandings as ASD.  When I was actually diagnosed with depression I was incredibly relieved.  Relieved because it turned out there was a reason for the way I felt other than because I was the human equivalent of Marvin the paranoid android and it wasn't my fault.  I know one of the big differences between depression and ASD is depression can be treated whereas - as yet - there is no treatment for ASD but there is at least support available (especially for the school years) and simply understanding there is a reason you are the way you are is pretty powerful on its own.

Some people favour the 'wait and see' approach to diagnosis.  If the suspected disorder isn't a current problem or it's at least being managed at the moment they don't see the point in going through the - admittedly often long - diagnostic procedure when it won't actually change anything.  I get that.  And I get that not pursuing a diagnosis isn't the same as not doing anything to support a child's needs.  I guess, after watching my sister go through most of her schooling without anyone realising she was autistic, I'd rather be proactive.  Right now a diagnosis would change nothing for Tyger and even once he goes to preschool after the summer it's unlikely to change anything.  But once he starts at school he may need extra support and that support may only be gotten if he has a diagnosis.  It seems inevitable to me he'll struggle at some point and I want to have already done as much as I can before then so any help he needs can be accessed as soon as possible rather than having to wait for months - or even years - before we even get to the point of discussing what extra support can be put in place.

And nobody needs to know.  There is no onus on a parent (or the child) to tell other parents or friends or family members or strangers in the supermarket about the ASD.  But if you decide things will be easier for your child if certain people do know, that option is still there.  And it's certainly nothing to be ashamed of.  I'm not about to write a Disney song all about accepting yourself for who you are or anything but if you suspected your child was short-sighted you wouldn't avoid getting it looked at just because wearing glasses might get the child teased.  ASD will continue to be viewed as something to be ashamed of if we continue to act like it is.

Starting the Diagnostic Journey...and the Yellow Toaster

Tyger had his first appointment in the long road that is ASD diagnosis at the hospital on Monday.

Of course he was up for two hours in the middle of the night on Sunday because it's an unwritten baby and toddler rule that they must allow you as little sleep as possible for days when you want to be alert and well-rested.

Despite the usual stress of trying to leave the house with Tyger and Baby Bear, plus the added stress of finalising and printing the six page document I'd made about Tyger (no, really), we were in the car and ready to go on time.  Mum drove us there and the traffic wasn't too bad at all considering the time of day (morning rush hour).  It was smooth sailing - or driving - right up until the roundabout practically next to the hospital, where the traffic slowed down considerably.  Have I ever mentioned Tyger gets car sick?  Well, Tyger gets car sick.  Badly.  He tends to get sick about 20 minutes into journeys...the hospital is about 20 minutes away.  All I'll say is it was very unfortunate we got stuck at that roundabout.  Very unfortunate.

We made it to the children's ward with Tyger in a change of clothes and as much of the sick cleaned out of his hair as I could manage with baby wipes (in the glamourous world of motherhood you get used to that sort of thing along with having small people spit things they don't like out into your hand, wipe their runny noses on your clothes, leave bits of fruit and cheese hidden away under sofas/in toy kitchens for you to come across at a (sometimes much) later date - the sick in the hair thing wasn't that bad, really).  Tyger immediately tried to play with a small boy who looked terrified and - with his mother - backed away to the seats.  Tyger tried to follow so I ushered him over to the toy corner away from the poor kid.  Knowing why Tyger was at the hospital meant I was more sensitive than usual as to why other kids might be there and I felt if the poor boy wasn't comfortable with a child he'd never met enthusiastically forcing friendship on him it was important I let him have his space.  The distraction technique worked a little too well, though, and when the nurse came to weigh and measure Tyger he did not want to leave the trucks and cars he'd found in amongst the toys.

Normally, when we're out somewhere, I'm anxious about how Tyger will react and behave.  There's always the worry he'll suddenly start screaming and kicking, that he'll break things or run off, that he'll throw himself on the ground and shout, that he'll try to hurt someone else or himself.  I think it's a worry many parents of children on the spectrum face but the one time they want their child to exhibit these behaviours is when they're being assessed by the professionals.  So, the fact Tyger got angry and upset over being taken away from the toys, the fact he'd been up for two hours during the night and the fact he'd been violently sick - several times - on the way to the hospital were not exactly unwelcome.  The nurse was obviously used to dealing with small children.  We managed - pretty much - to weigh him but she said measuring his height wasn't worth the distress and he could go back to the toys.

However, when the paediatrician called us in Tyger didn't make much of a fuss because the assessment took place in a room he'd already been trying to get in (and the fact the doctor told him he could take a tractor from the toy section helped).  He was thrilled to realise there was a Thomas the Tank Engine wall sticker on the back of the door.  I was thrilled to realise I'd be sitting with my left side towards the paediatrician so she wouldn't see the volcano sized spot on my right cheek.  We have different priorities.

I won't say Tyger was as good as gold.  For one thing, I doubt you could say that about any toddler.  For another...I don't get the simile.  Surely the 'good' we're talking about is in reference to good behaviour.  Gold - being, you know, inanimate and all - doesn't behave in any way.  So, is the comparison to gold being 'good' in the sense it being valuable?  I don't really think the two are alike at all.  Is the phrase simply so popular because of its alliterative quality??  Should we start saying 'as tired as a teapot' and 'as skinny as the sky'?  They both have alliteration going for them and make about as much sense as 'as good as gold'.  I guess I could search it and would probably find out I'm completely missing the point and it does make sense but I feel I've already spent entirely too much time on this already.

Anyway, I have been told it's common for autistic children to decide the one time they'll be on their best behaviour is when they're being assessed.  I also know Tyger tends to love going to new places and meeting new people so despite the lack of sleep, the roundabout incident and his normal behaviour I anticipated him being more genial than usual.  He is still Tyger, though, and the paediatrician did note a few moments of...non-compliance.  He was happy to build a tower with building blocks when she asked him but when she wanted him to try to make a bridge he insisted on lining all the blocks up and making a 'train'.  She tried again...and again.  She tried taking away most of the blocks so he only had the three she wanted him to use and showed him several times how to make a bridge.  He would not make a bridge.  He also refused point-blank to jump when asked.  She even tried tricking him by moving on to other things he was willing to do and then coming back to the jumping and it almost worked but he caught himself just as he bent his legs.  I don't know why this was a sticking point for him.  He was happily jumping along to a song this morning but once he decides he's not doing something it's just not going to happen.

So, the paediatrician and I discussed Tyger in depth.  She was very impressed by my six pages listing all his traits and behaviours (lists FTW - do people say that anymore?  I feel very out of touch, not helped by the fact I asked my 14 year old sister what she meant by 'shipping' recently to be told rather witheringly that 'it's an internet thing') and said it would be a great help to her when she came to write the report.  Whether she meant that or viewed me like that annoying kid in class who actually puts their hand up when asked 'any questions?', I don't know.  I'll tell myself she was being genuine.  The doctor got Tyger to perform various tasks and gave him a physical and he played with the toys whilst we were talking.  There were cars, a Thomas toy, a plane and loads of things he's interested in...so, of course, the one thing he seemed particularly taken with was a yellow toy toaster.  There was no bread to go in the toaster.  In fact, most of the food from the toy kitchen seemed to be missing.  But he loved the toaster all the same and asked - more than once - if he could take it home.  He made the paediatrician and I toast and bagels.  He has also told me several times since that he needs to go back to the doctor to see the yellow toaster.  So, guess who's got a toy toaster sitting in my bedroom ready for his birthday next month?  No doubt, he won't care by then.

We discussed the next steps and the paediatrician agreed there was definitely enough evidence to go ahead with a full assessment.  He'll see two more health care professionals (one is the child psychologist - we already have the appointment through though it's not until July - and the other is likely to be with a speech and language therapist) and then all three of them will discuss their findings and decide on whether to give him a diagnosis.  She said it's rare for a child under four to be given a diagnosis and it's more likely - if they decide he does have ASD traits -  they'll review it again in a year or two, which is fine.  I understand they have to be thorough.  It's hard with toddlers because so many normal toddler behaviours are similar to ASD traits and it might not be clear whether any given behaviour is connected to autism until they're older and you can see whether they grew out of it.

For now we'll go to the appointments, I'll see if it's easier to get travel sickness tablets for Tyger when he turns three and I'll keep you posted on how much he likes his toy toaster.  It even comes with toy toast!

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.

Not on Vegetarianism (Does Tyger Have Asperger's?)

Tyger is already moaning at me for not paying attention to him so we'll see how far through this I actually get before giving up and posting it unfinished (I know there's a 'save' button but if I kept working on posts until I liked them, I'd never post anything anywhere right now).

So, for one thing, the Gro Clock is still working really well.  For a child we very much suspect has Asperger's, it is the perfect visual prompt for bedtime and getting up time.  I'd highly recommend it.

And...I have an upset Tiny Tyger on my lap (I had the audacity to tell him off for spitting his milk out) asking for 'Piggle Piggle' and 'Uh Dezzy' (Iggle Piggle and Upsy Daisy are two characters from the TV show In the Night Garden, which is like The Magic Roundabout of today.  It's like crack for kids and annoys the hell out of me because of it's weird problems with perspective and...anyway...).

And so the post has been derailed.  I was going to write about vegetarianism and the ethics of bringing up Tyger and Baby Bear as vegetarians (and whether, as parents, the Wolf and I are imposing our lifestyle on them etc.) but my focus on that has been somewhat shifted and I imagine Baby Bear will be awake soon so...

ASD.

One of my sisters was recently diagnosed with Asperger's Syndrome (AS).  This is a label no longer used in the US but is often still used here in the UK.  Some people might know it as 'High Functioning Autism', or simply Autism Spectrum Disorder (ASD) but it probably doesn't matter too much since it is all part of a spectrum, anyway, and one of those labels really tells you what - specifically - my sister has problems with.  A very, very brief overview would be to say she has problems with change or transitions, she has high levels of anxiety - especially about social interactions, she has 'meltdowns' (which mean as a 15 year old she will still occasionally get to the point where she rolls around on the ground or bangs her head off things or can't stop wailing or some combination) when she is overwhelmed, she needs a predictable routine in place and all sorts of other things.  Of course, that doesn't tell you much and there's so much more to it but...Baby Bear awake soon etc. (also, I have to put a chicken in a Fire Engine).

What I was getting at is it runs in our family (my dad also has AS but has never been formally diagnosed and there are diagnoses of Autism on both my mum and dad's sides of the family) and I have a reasonablish knowledge of AS.

So, we're pretty sure Tyger is an Aspie.  Maybe next time or the time after (if I actually write that veggie one next time) I'll actually run through some of the reasons for this.  The health visitors who did his two year check said it was too early to tell (and, hey, he makes eye contact and has a good grasp of language so that's a good sign, right? - nevermind that these are irrelevant when it comes to AS) and will get in touch again in four to six months to reassess and possibly refer him.  And that's fine because you might only get one shot at a diagnosis and right now a lot of his possible 'traits' might just be normal for his age so waiting until he's older and should have outgrown these things really does make sense.

But it feels dishonest to say he has Asperger's when he doesn't have a diagnosis yet and might not for years.  Yet it feels just as dishonest to say he doesn't.

I don't know.  Best wishes.