Autism and everybody being an expert

[BerriTerri]

I can’t say I was warm to the diagnostic process, I certainly didn’t ask for one but we wound up with a diagnosis but and we’ve muddled through.

Three years on there’s still a few people who are obsessed by the are they/ aren’t they!

One woman apparently works with children, I presume young and severe, and watches like she’s doing a professional observation and interrupts other topics with comment like ‘look, eye contact to thank someone!’. I’ve spent time teaching dd skills and she’s learnt some. Yes. I end up wanting to slap her after half an hour. I’ve asked her to stop a few times and I avoid her now but occasionally at something like a party we’ll end up near each other. Dd has no LD and can learn skills and is getting bigger so isn’t non verbal or hiding under tables anymore...

Another likes to tell people that dd doesn’t have it for xxx reason. As in new mutual friends I wouldn’t have told at all.

It does my nut in. There’s nothing else that people get so damn nosey over. I haven’t even told people in the last few years as it bugs me that much

People have an idea of what autism is. Either through their experiences (eg teaching maybe a specific group), TV, media, whatever really and they seem to be stuck in that view.

I have a DD with a ASD and LD but because she is friendly and outgoing to some people she ‘isn’t autisitc’. On the other hand she can be difficult and they think she is just badly behaved (thanks MIL).

People have a set idea and yes they feel completely entitled to tell you about it. God knows why. I hear your pain. I just figure it’s about them not me or my DD so I ignore people now.

I know what you mean OP, I'm dyspraxic and have so many people pointing out things that I'm capable of so couldn't possibly be. That or they start wondering if they too are dyspraxic because they dropped their purse the purse the other day. -I hear a lot of people doing this too with the symptoms of autism.
I try to not talk about it now unless I really have to, must be quite difficult when it's your little one though.

Yes lots of people like to say their piece. I had one woman at a xmas party telling me I should get a second opinion on my son as he didn't seem autistic to her (in the tiny amount of time she has spent with him) and she thought it was so overdiagnosed nowadays. I had to walk away to be honest! The thing is autism is so varied and not fully understood - I have an autistic child but I still don't really get it myself! I don't really think about it as a thing with him. He is who he is. Sometimes he finds things more difficult or thinks in a different way to me but I don't see him as my autistic son. I barely mention it to people - why should I? Anyway I get where you are coming from - I tend not to bring it up as mainly people say something stupid in response but I guess if you don't have a child with autism you don't really get it.

That or they start wondering if they too are dyspraxic because they dropped their purse the purse the other day. -I hear a lot of people doing this too with the symptoms of autism.

Yes one of my friends does this about her younger kids with me - worrying that they might have it and trying to compare with my son. I understand but it also pisses me off that she sounds so worried that her son might be like mine. I know it's ok to be worried about autism but it still upsets me. Unreasonable probably but it's how I feel!

My daughter has finally developed a few code friends- this is the main reason she ‘can’t be autistic’ 🤨

It depends on how you want to handle it.

Ignoring can be difficult, challenging them every time when you're 1 to 1, or if totally brassed off and in a crowd can work. Try saying something that lets them know neither you or your child want their confidential medical information disclosed or discussed.

Do you want me to discuss your child's confidential medical information with everyone I meet? Then stop doing it with mine.

Why is my child's medical condition any business of yours?

What would you do if someone you knew constantly commented on your child's disability?

Why do you think it's appropriate to disclose my child's medical diagnosis?

YANBU. I even had a member of staff at DD’s special school saying DD didn’t seem autistic as she is sociable and likes making friends. She ‘doesn’t seem autistic’ when there are no demands on her. Can make eye contact and doesn’t go on about special interests. Not interested in maths or coding so can’t be Aspie according to some ‘experts’.

My girls special interest is making friends and all the super girly stuff that videos show you do. She loves practicing the laugh, giggles, things to say. She’s as into it as the stereotypical aspire is into coding or trains!

My son is four and has autism and is non verbal.
His eye contact is brilliant, he loves giving and receiving kisses and affection, he never has ‘meltdowns’, he doesn’t display repetitive behaviours. He sleeps for 10 hours at night, he eats most foods, has no problems with his mobility.
The amount of people (mainly family) who’ve asked and still ask if he’s had a hearing test done, just in case he’s partially deaf rather than autistic, is ridiculous.

My dd was actually diagnosed as deaf first. She has single channel focus and distraction tests didn’t work

I can’t stand it when someone says they understand because their aunt has autism.. or their cousin. No you bloody don’t!

Having a cousin, aunt or brother with autism is not being the same as being a parent of a child with autism.

I even worked with autistic children as a 1:1 with two kids before I had my son. And even that is completely different to parenting an ASC child. But those who also work in the same field seem to think they understand when they don’t.

Or the worst one “everyone’s a little bit autistic”

Sylviaandsydney

My son is exactly the same! Good eye contact with parents, never meltdowns and is so affenctioye

Or the worst one “everyone’s a little bit autistic”

Oh gosh yes, “we’re all on the spectrum, aren’t we?”

No.

As the saying goes : you know one person with autism, you know one person with autism. People are irritating, but they generally mean well, they just don't get it. Many people's understanding of autism is Rainman. If I had a pound for every one I have the eye contact conversation with I'd be bill bloody gates. People mean well, they just chat shit.

Thankfuck or indeed "Oh we're all on the spectrum". As said by the youth mental health admin lady on the phone earlier today.

X post Sylvia :)

'ah aren't we all on the spectrum' / 'he's just a typical boy' / 'but he's so polite' / 'well he seems happy being on his own all the time' / 'but he makes eye contact' / 'have you tried no screens/exercise/warm milk/heavy blanket to get him to sleep?' / 'why would you want to label him?'/ 'were you affectionate to him when he was a baby?' / 'did he have a difficult birth?' / 'have you tried homeopathy?' / 'you're so lucky that he has no interest in being cool or part of the gang' ETC

For anyone who hasn’t seen it - this short comic strip is very good for explaining why people with autism can be very different from each other
themighty.com/2016/05/rebecca-burgess-comic-redesigns-the-autism-spectrum/

Oh oh oh “have you heard going gluten free can reduce their traits”

Well yes I’d heard but it’s bullshit as my sons gluten intolerant anyway 🙃

Heard so many of these. My entire family are experts. It dawned on me from comments made that they expect that with sufficient support and intervention he'll be cured. Obviously at the moment our parenting isn't 'curing' him quickly enough so we get lots of tips.

I read something Dr Tony Attwood said (& he is a great Australian expert on autism): 100 children in a room within the spectrum & you will have 100 different ways of expressing it BUT they will all have something in common.
You have a dd & girls/women symptoms/expression of autism is not the (always because some of course do!) same as boys/men. Which (if I have said this once....) makes sense as in the DSM 5 (diagnostic criteria) women don't have same symptoms as men in completely different disorders like schizophrenia - in this disorder women develop it later & the range of symptoms (in general!!) are different - so why shouldn't the same thing happen in Autism? The problem was the original diagnosis (By Kanner than Asperger) was based on males so there was always a bias & in the 1940's they lived in a patriarchal society & I suspect the thought was that the male role was out in society & females would be cared for soles important.

Ever since we started the assessment process with DS, we constantly get people offering up their “expert” opinion, which they seem to come about because their aunts hairdressers dogs brother in laws accountant is autistic 🙄

Even in our own family, he gets either referred to as naughty, difficult, whatever, but no he’s not autistic because he’s not like our relative who is diagnosed as in the spectrum. They can’t seem to wrap their tiny minds around the fact that all people with autism are as different as all people without. He’s not naughty because he has meltdowns (I’m talking to you fuckwit BIL).

doh! so less important!