Undermining comments about autism

[Opal93]

I am becoming increasingly upset with more and more ridiculous comments about autism. I know for a long time people didn’t understand it but surely there’s enough on TV and the internet for people to be at least a little bit more informed? Here are a few of the most ridiculous comments, ranging from old to young people. I know none of them come from malice but I do think to myself “SERIOUSLY??” And often don’t know how to respond. “ he doesn’t look autistic.” “At least it’s not a disability” “at least it’s not Down’s syndrome” “did you find out at your scan and were you offered a termination?” “He’s not that bad” “at least he might be a genius” “you shouldn’t have another baby what if it is like him” “he just needs more discipline”

Doona my daughter is like this, female autistics especially are very very good at masking. What you see as opposed to what happens when she’s at home in her ‘safe’ place could be very different. It’s one of the huge issues with diagnosing girls, my daughter was the best behaved, most helpful child ok earth at school. Then she’d come home and spend her evening rearranging toys obsessively, or crying whilst clinging to me. Or hitting her head off the wall. She used to stroke the carpet pile for hours. She never ate. She hated certain clothes.
Now at 17 she has a pass where she can leave class when it gets overwhelming, she has extreme social anxiety. One time she didn’t leave her room for 6 weeks. But if you met her in the street you’d have no idea about any of that

This ^^

My 18 year old dd1 is autistic.

But you wouldn't think unless you knew her well.
And then you realise just how much she's masked over the years and what her struggles really are. And she struggles with eye contact and routine when she was in school in college, and her meltdowns consisted of not moving or speaking for hours and then going so suicidal she was hospitalised at one point during her gcse exams.
There has been a lot of support put in place over the years from school, tac team, councilling and she's now away at uni and under the disability team there. Its still such a worry. She also has a wonderful boyfriend.

But yes I had the oh your children don't look autistic (ds also is) really pees me off

@HalcyonSea This is nonsense I'm afraid. how exactly would you mistake someone with an IQ under 70 for someone with a higher IQ? It would become obvious fairly early on, as they struggled with fairly basic literacy/numeracy/comprehension. However if you have a high IQ but communication is a real barrier it is the default to think you lack intelligence. How is this nonsense?

@timeforanewnameagain

I agree *@Sirzy*. I did the EHCP process myself, and as I said I have a semi-legal background which was hugely advantageous because it meant that the enormity of the form filling and documentation was possible for me and it also meant that I could read and comprehend the legislation surrounding the process and understand exactly what we were entitled to expect. It meant that when something didn't happen as it should, instead of being fobbed off I could fight back. I even had the early years SEN teacher from the council shrug things off as 'that's just the way things are'. No, it doesn't have to be that way, but you do need to know how you can pipe up and say 'no that's not good enough' and remind the powers that be of their obligations to your child.

But you know, it's not even that easy to find! It's also not all in plain English, it's quite complex, a bit contradictory in places and for someone who doesn't have my background I can totally see how it would be a huge challenge. DH is a well educated engineer, he's a clever man and half the time he couldn't make head or tail of a lot of it.

Children with SEN are already at a disadvantage, and the current process of diagnosis and seeking an EHCP does nothing to help!

Completely agree with this. With my two I have periods where the admin becomes a full time job. I have a medical science and educational background (in a previous life, before the boys happened) so was able to plough through everything quite systematically when I needed to - LA backed down pre tribunal for Ds1 and didn't even go there when I said it was time for a specialist placement for ds2. Also got 6th form placement agreed for Ds1 without a fight but it turned out that Ds1 didn't want to do school any more).

DH finds it overwhelming and mostly leaves it to me. The whole system is designed to exclude kids who don't have reasonably well educated parents with the time and mental resources to work it out.

And don't get me started on social care. We've deliberately kept that out of our lives until recently and now I'm having to learn how to argue with stupid. Seriously, we've gone for a referral for respite because tge lockdown have done a real number on remarkably gregarious ds2's mental health and our social worker is so random that they've become another source of anxiety for him. My rule has always been to only involve professionals who genuinely make all our lives better and I'm beginning to regret this one.

The whole system is designed to exclude kids who don't have reasonably well educated parents with the time and mental resources to work it out. I agree with this. It’s utterly ridiculous. I too am very well placed to manage the admin and am frankly staggered by the work load at some points dealing with the admin surrounding ds’s schooling.

[quote 5zeds]**@HalcyonSea* This is nonsense I'm afraid.* how exactly would you mistake someone with an IQ under 70 for someone with a higher IQ? It would become obvious fairly early on, as they struggled with fairly basic literacy/numeracy/comprehension. However if you have a high IQ but communication is a real barrier it is the default to think you lack intelligence. How is this nonsense?[/quote]
Because it's incredibly difficult to understand and measure an autistic person's IQ in most cases due to the communication barriers and other limitations in the standardised IQ tests which become even more problematic when you add in the additional challenges that many people on the autistic spectrum face in completing tests etc. It's ridiculous to think that a random person who barely knows somebody and has no specialist knowledge in the area would be a good judge of an allistic person's IQ, let alone be able to separate out the elements of intellect from the impacts of autism.

Those comments do seem particularly dumb. And I agree in that I’m surprised people have that little knowledge now a days.
However, autism is a very confusing subject. So I get why many don’t understand it (although not quite to the level you have explained!). As a mother of an autist child, and many hours of reading and living trough it - I don’t fully understand.