To be irritated by F&F reactions to autism diagnosis

[notanothercrapusername]

Hi there,

My almost 4 year old DD was diagnosed (clinically diagnosed) with autism a few weeks ago. I've long suspected she had it, just because of some funny quirks but her issues became apparent when she started preschool a year ago. I'm a sahm, and she's always really struggled in groups of children or being taken out of her routine right from being tiny and when joining preschool it became apparent that she couldn't cope with transitions, and literally struggles to function in a setting where there is a lot of noise and lots of kids. Thats simplifying it massively but for the purposes of keeping this brief! The recommendation to have her checked came from the preschool SENCo and her Keyworker who is extremely experienced.

Anyway, we've got the diagnosis and can begin moving forwards with strategies to help her. However I'm finding that lots of friends (who all have young children, all of whom are NT so not sure how they're experts all of a sudden) plus family members are being somewhat dismissive and almost disbelieving, constantly questioning what we've been told by the doctors. We had her assessed privately by a Professor who specialises in the area and a paediatric child psychologist at a well regarded clinic. She is also going through the NHS assessment route.

When I've told people, or explained that this is the reason we won't be doing something that makes her really distressed at the moment until we figure out how to make things easier for her etc people have been tending to say:

'Really? No that can't be right. She's so clever! Maybe she's just gifted instead?' (Her cognitive development is very advanced for her age, but her social development is very behind)

'But she can't have autism, she's been fine whenever I've seen her. She's just shy' (they've usually seen her at home or somewhere she's comfortable and generally she is 'fine' then and incidentally she's not shy at all when she's comfortable she'd chat the hind leg off a donkey)

'It's because you've been a sahm and she's not used to groups, she'll get over it' (she was the same when I took her to toddler groups when she was small, never left my side or interacted with any children)

'You've had postnatal anxiety and she's just copying you, she's anxious not autistic' (I did, when she was a baby, but am now recovered)

'I'm a SEN teacher and I wouldn't say she has autism'

'No one in our family has autism, where's she got it from? She's learned that behaviour from somewhere'

'She just needs to make a friend and she'll be fine'

And loads more. Basically the long and short of it is it would seem that people think that actually she's fine, just been mollycoddled by me being a sahm and needs to get over it.

Over the years, and pre diagnosis I have tended to decline invitations where I know that she'd struggle to enjoy things, or kick off entirely and need to be brought home because I've never seen the point in taking her to something 'fun' that she's only going to hate. Things that are fun for most children are not fun for her. It's pissed people off undoubtedly, I've lost friends, and I imagine people have thought I've said 'no thanks' because I don't want to bother rather than for her benefit. What they don't see is that not doing things has actually been isolating and very lonely for me.

I'm getting increasingly annoyed now that I know that actually I was right to put her needs first and not just force her to do things because I or someone else wanted to and we now know why and yet people are still being funny with me or making stupid comments. We are actually going to have to start pushing her out of her comfort zone a little more, but we need to do this in a controlled way with strategies to help. Not just say 'oh fuck it, she'll get over it'. She can't just 'learn to behave'. She can't. She doesn't actually 'misbehave' anyway, she just cries and wants to leave.

AIBU? Im getting to the end of my tether with this and it's only been a few weeks!

@YourSarcasmIsDripping You could be describing me there. I wouldn't leave DD in a group scenario to use the toilet because I know she'd go wild without me there. And yes, being on the edge of your seat, almost just waiting to go. That's me all over.

I cried when I read Neurotribe - fabulous book.

I think any kind of spectrum for ASD is a bit of a mess - as its too two dimensional - it is normally more like a spider's web, with people struggling more or less with each of the aspects. But some children struggle with everything, where as my DD only struggles with some. Although that can present its own problems for her - I think she struggled so much in Primary school because she wasn't diagnosed so we didn't start school (especially the move from Infants to Junior) making it clear that she needed special provision and what they needed to adapt for her. Because we didn't know - but the school just expected her to fit in, and then labelled her as naughty which over rode the later diagnosis of ASD.

OP my top tip is to never worry about being seen as "that mother" you do need to be prepared to fight for your LO.

I absolutely understand why people go for private diagnosis. For my DS it was just over a year, that was 5 years or so ago. The wait for an initial appointment now is 2-3 years. That is 2-3 years that child isn't getting the right support, parents don't have access to courses and you are trying to manage everything. Every single consultant at the CDC near me also runs a private clinic. I doubt very much that they give different diagnoses in different buildings thus I find the comment about NHS diagnosis being more "believable" absolutely ridiculous.

I was fortunate that I didn't have to pay, but I know several who have. Early diagnosis was the best thing for my DS without a doubt. He's come on leaps and bounds. If he were being diagnosed now, it would be very different (and quite honestly, I'd be on my knees). In terms of eye contact, my DS does it, however, you often notice he isn't actually looking directly in your eyes, but it might be just to the left or right, or your forehead. I have always "taught" him to make eye contact because I noticed very very early on that he couldn't. He would, however, stare at the side of the sofa for long periods of time. They are ALL different.