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Tiny Tyger, Baby Bear and Me: So Much for a Diagnosis

Sunday 4 October 2015

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:

Mami 2 Five

My Random Musings


A Cornish Mum

Sons, Sand & Sauvignon

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At 5 October 2015 at 01:51 , Blogger Unknown said...

Oh hun, this sounds rough :-( The play leader sounds very naive. Stay strong!

At 5 October 2015 at 12:30 , Blogger My Petit Canard said...

I read this post and your blog for the first time having seen it linked up to the Sunday Stars linky, and I am so glad that I did. You opened my eyes for the first time to ASD and how it can manifest itself in children so young. I feel so naive for not having known this before. Im so glad that you wrote this post, and that I stumbled on it from the Sunday Stars. Keep writing and hopefully other people like me will read and learn about ASD. #SundayStars

At 5 October 2015 at 12:33 , Blogger My Petit Canard said...

My name and details didnt show above, so just that you know, its Emily :-) (www.mypetitcanard.co.uk)

At 5 October 2015 at 22:26 , Blogger helloarchie.blue said...

I'm in shock! I can't believe someone would be so insensitive and think they know your child better than you. My brother had severe autism and learning difficulties so my parents went through the struggles of getting a diagnosis, he was 5 by the time they had it. Sorry you had to deal with this! #twinklytuesday

At 5 October 2015 at 23:54 , Blogger Lady Nym said...

I knew very little about ASD until my sister went through her diagnosis. Now, with Tyger as well, I like to try inform others.

At 5 October 2015 at 23:59 , Blogger Lady Nym said...

Thank you. I suspect it's a case of ignorance rather than malice. A lot of people have quite a set idea of what someone with ASD is 'like' and Tyger obviously doesn't fit that. I'm sorry to hear your parents had such a struggle. I'm hopeful that things will get better.

At 6 October 2015 at 02:43 , Blogger Unknown said...

That really sucks, I'm sorry. People can be such jerks. I hope you can ignore the numpties and rise above it, knowing you are correct. I blatantly wouldn't be able to though- I'd a big glass of wine and a big rant at anyone who'd listen x

At 6 October 2015 at 08:13 , Blogger Sadia said...

Ugh! Not only can I not believe that she has the nerve to judge your parenting, but that she would actually say it to your mother's face!!! And that her limited experience outweighs all the other professionals you've seen!! I think any parent knows that children behave differently when they feel safe (with people who live them unconditionally) than elsewhere. In fact, my daughters' best friend's parents and I use this fact, sometimes talking to each other's children about difficult topics that get too emotional when discussed with Mum and Dad (e.g. divorce and phobias).

Thanks for linking with #TwinklyTuesday.

At 7 October 2015 at 01:31 , Blogger Alison said...

The msking at school and reacting at home is so incredibly common, and I'm astonished that more schools and nurseries aren't aware of something so basic. Carry on getting the message out there. #anythinggoes

At 8 October 2015 at 15:28 , Blogger Unknown said...

I'm so sorry that you are going through this, it was really naughty of the play leader to say things like that to your mum. I know they are not the same thing, but when we found out my son was colour blind and also when my daughter was diagnosed with Ehlers-Danlos Syndrome I made sure the teachers knew as much as I did by printing off information about the conditions, things they could expect, ways to help the child in school etc. I'm having to go through it all again now my daughter has moved up to the comprehensive school, because of course she looks 'normal' so can't possibly have issues right? But we are slowly getting there again. I hope when he eventually moves up to school you will find a knowledgeable and understanding one. Good Luck and thanks for linking up to #sundaystars xxx

At 9 October 2015 at 08:37 , Blogger Random Musings said...

I honestly didn't know that children with ASD tried to hide it in a school setting. In hindsight, it makes complete sense that they would though for the reasons you give - them want to fit in with their peers. I would expect people working with children to know this though and for the play leader to make this suggestion, whether well meant or not, is ridiculous. At the very least, she should have been having that conversation with you rather than about you.
Thanks for linking up to #AnythingGoes

At 9 October 2015 at 10:23 , Blogger Tracey Abrahams said...

Im very supprised that your playleader doesnt have a better understanding of ASD as its not a rare condition by anu means. I think her behaviour i.e. questioning your mum was unprofessional, if she had concerns or questions about the diagnosis she really should have gone to you. #Picknmix

At 9 October 2015 at 13:35 , Blogger Stevie - A Cornish Mum said...

I can only imagine how this felt, as anyone questioning your parenting skills cuts like a knife, especially when you and your child face extra challenges already. Hopefully sitting down with the pre school might help, and may help the parents of ASD children that are there after Tyger.
Thanks for linking up to #PicknMix
Stevie x

At 9 October 2015 at 13:51 , Blogger Mud, Cakes and Wine said...

As a mummy with a little boy aged 5 with ASD and SPD I know just how hard it can be with people not understanding how much autism is a spectrum and not two people are the same #picknmix

At 19 December 2015 at 12:14 , Blogger Unknown said...

Another great post Nym! Hayden is the same at school as he is at home, so I haven't experienced what you describe, however, my parenting has been questioned before (very recently) by the head teacher and it did not go down well at all. There is no bigger insult to a parent than it be suggested you aren't very good at it. Especially one that struggles daily with behaviours that are no fault of the child themselves. Thank you for linking up to #spectrumsunday, I really hope tos ee you again this week xx


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