How do people not "believe" in Autism?

[MissPollyHadADolly19]

Just that really, bit of a rant more than anything.
It's not the tooth fairy or Santa, it's a recognised disorder!!

Relative struggling with her DC who's on the spectrum and partner believes it's just shit parenting (obviously not from him cos he's perfect, only the mother gets blames of course )

How do people really not believe in Autism? Or any mental illness for that matter.

An EHCP is for children who have or may have SEN, the threshold for assessment is very low

Not quite. The test is whether the child has or may have SEN, and whether he may need support through an EHCP. That second limb is important, because the expectation is that the vast majority of children in schools can be supported without EHCPs: you need to be able to demonstrate that normal mainstream resources may not be sufficient.

5zeds you make some really good points. I think I sort of worry that by having such a huge bucket encompassing "autism" it diminishes the attention for those who's challenges are perhaps the most severe.

A close older relative of mine has a lot of traits that I think might mean he could be investigated for as autism by today's definition. However, he grew up in a very very predictable routine environment with a huge amount of structure, has a lot of exceptionally tolerant people around him who manage his needs almost without thinking & was enabled to succeed academically & work in a job populated by (interestingly) a lot of similar people.

Perhaps it's not always the individuals with the issues, its (partly) the environment.

I do now x2boys - if one more person says “it’s not a disability, it’s a difference” I’ll lose my shit.

My kids not being able to use a spoon, not understanding words, being awake for 3-4 hours in the middle of the night hurling themselves around so their cots travel across the room, unable to tell me what they want or need, needing constant sensory stimulation - they are bloody well disabled. It’s fantastic that not everyone with ASD has to face these issues because I wouldn’t wish it on anyone, but absolutely I know more about severe ASD than someone who’s been through mainstream education, has relationships, flown under the radar of detection - that really sucks I am sure, but there’s no way anyone who spends a few mins with my boys is missing what’s wrong with my two.

I find the vocabulary hard too. My daughter (and possibly me) is ASD. But she flew unde the radar until 9 years old as was so compliant in school and very high IQ. She could be called quirky etc. She certainly struggles - but nothing like someone who has severe autism.

But people dont like high/low functioning and aspergers is no longer a diagnosis. When talking to someone with severe autism I never know how to properly acknowledge that,although we have difficultues, im very aware they have it harder. "Proper" autism isnt correct, etc.. !

So long as you understand that a huge number of autistic people AREN’T able to pass as NT, or attend ms school, or work or in some cases communicate verbally at all, AND you recognise that if they aren’t accommodated in your clubs groups or activities then those activities are not serving the entire community, I think it’s fine. What I find grindingly sad is how little people seem to care that they aren’t there. In fact often there is no attempt to include those children or families at all.

Same reason people don't believe in depression or allergies or dyslexia or being gay. Because they are arseholes.

@SinkGirl
Thank you for explaining in more detail about regression - definitely makes more sense of the vaccines causing autism fears. I can see how if the days coincide parents would certainly fear the vaccine had done it.

I hope your boys get the support and attention they deserve from schools and wider society as they grow up. And that you have support too.

So long as you understand that a huge number of autistic people AREN’T able to pass as NT, or attend ms school, or work or in some cases communicate verbally at all, AND you recognise that if they aren’t accommodated in your clubs groups or activities then those activities are not serving the entire community, I think it’s fine. What I find grindingly sad is how little people seem to care that they aren’t there. In fact often there is no attempt to include those children or families at all.

I recently quit going to the support group I was a member of because of the "we're au-some!" and "it's a difference not a disability!" rhetoric. When the group started out most of the children were at similar ages/stages. Five years later and a core group of the children have progressed in line with expectations while several have not. The activities and support being offered by the group now is targeted at the interests and needs of that core group with literally nothing being offered for the other children and everything they post about in the online group, all the workshops they hold, all the parent get togethers they host, are all focused on the positives of autism, the quirks, the camaraderie of being an "autism parent" and "we're all in it together". That's fine, it's okay to say that your childs autism is an integral part of them (and by extension, you) but there is no acknowledgement of the difficulties faced by parents who are still changing nappies, who have to lock their child in at night so they don't get out and hurt themselves or run off, who have a child not school because they can't cope, who self-harms, who will never live independently even with support. Those parents need support too and it needs to be more constructive than a jokey "hooray, we're the next stage of human evolution!"

I don’t care about the ra-ra-au-some nonsense. Not my groove but whatever makes it easier. I DO care that there is an invisible part of the community, that there only way of being heard is not acceptable and their voices (aka parents) are not only silenced but often treated appallingly, and that funding and support is increasingly focused on those who present more neurotypically.

Yes, apparently you’re an abusive parent if you spend any time wishing your child weren’t autistic, or if you consider any therapies / early interventions that seeks to tackle their impairments, if you don’t just accept your child as they are. I love my children and I want them to have the best possible lives and ideally I would like them to be able to live independently, have a job, have a family. I don’t want them to have to live in residential care when we are no longer able to care for them. Apparently this makes me a terrible mother. And this criticism is always from people who are living independently, with a job, with a life.

And yes, you see lots of “my child was non verbal and in nappies until 7 and now they are in mainstream school and going to university and speak eight languages and have 800 friends”. That is brilliant, that is so wonderful, but that is not reality for many autistic people.

My boys are still at the age where people won’t notice there’s anything different about them in passing - they’re not the only 2 year olds I know who have speech delay (although most can communicate in some way), not all 2 year olds are confident and sociable etc. Then people notice my two aren’t looking at people at all. They’re not saying anything. They’re constantly moving. Oh wait, they’re eating tarmac now... and then the staring starts.

Over the next few years their issues will become more obvious. I’m absolutely dreading it.

Mine’s a teen now and a different presentation but I remember how very scared I was for him at two. Very few people spend large parts of their children’s lives hoping to out live them. Not much has changed really, life plan still is out live everyone. The unsolvable doesn’t overwhelm me as much anymore.

It’s awful isn’t it? I just kept hoping there’ll be a sudden improvement... that hope has basically gone now.

My nephew is ASD but at the other end of the spectrum to ds, he will never be able to live independently, I know my brother & sil are really worried about what the future holds for him & he is only 12.

Yes, apparently you’re an abusive parent if you spend any time wishing your child weren’t autistic

DS is 10yo but cognitive testing puts him on par with your average 5-6yo. That might develop inline with him so he'll always be behind his chronological age but will progress or this could be as good as he gets, theres no way to tell and I want think too closely about the future or else my heart gets too tight to beat properly.

Younger DS is also autistic but presents differently, we don't have his cognitive results yet and he's not having too many difficulties right now but again that could change.

One of my other DC is NT and the youngest is too young to tell just yet. I have a few worries about various behaviours but they could be learned habits from siblings mixed with a bit of toddler eccentricity and ego.

Mostly I stay positive and I love my DC, I really and truly do. It's not the life I envisioned but it is what it is and railong against it won't change it. However if autism was a person I would kick that fucker right in the face. Hard and repeatedly.

Just a musing but I wonder if the autism itself is why some high functioning people are denying, for want of a better word, the experience at the other end of the scale? (from what I’ve heard, backed up here, rather than personal experience)

I like my adhd, and on a personal level I don’t really get why some adults choose to medicate to a level where they are more nt. But I can understand why because for some the negatives outweigh the positive. And I have absolutely no criticism for any parent that decides to go down the medication route. Me deciding I don’t like it doesn’t mean I believe others should refuse recommended treatment that they and many others benefit from.

Likewise when a parent raises frustration/ difficulty with their child’s adhd. A small part of me might be thinking ‘but why would you want to deny them such a great thing just because you don’t think that way’ But the main part of me can recognise not everyone with adhd sees it as a positive, and either way even if the child grows up to love it like me, it can be hard going for the parent in the meantime.

Even if it’s a small child with other issues on top of adhd, to a large extent I tend to understand their perspective/ behaviour far more than any nt person could. But still be able to acknowledge that those who know the child well, let alone the parents, know far more about the difficulties that child faces and the best way to support them. So any thought I give is an aside/addition to the parents view.

Whereas at the risk of stereotyping, the very condition of autism itself might make that more rounded, open view of the other perspective hard or even impossible for some unless they’ve experienced it firsthand

My friends son has autism and adhd ,he's on medication n because he can't function without it he's isn't getting adequate schooling ( despite being in a specialist unit ) because his needs are complex and his adhd couple with anxiety prevent him from learning ,I hear you sink you know your boys ,autism doesn't s very much a disability for my son too ,when people try telling me it's not a disability just a different ability blah blah, I ask them how not being able to talk and not being toilet trained aged nine isn't a disability.

The one that annoys me most is "we're all on the spectrum somewhere..." or "we're all a little bit autistic". It makes my temper rise and I automatically consider the person saying it to be an utter twat.

Venger this link is good for dispelling all the idiotic spectrum comments.
theaspergian.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

The medic who dxd my adult dd with ASC actually said 'We're all on the spectrum somewhere'

The SENCO at DS school who really should know better asked me what DS' special skill is, maths or computers? "Its always either maths or computers". She also told me there's no way he is autistic as he makes eye contact and is nice and chatty, he also doesn't need an EHCP because she once asked him if he needs any help and he said he's fine.

The thing that puzzles me about parents who want to remove autism from their low functioning kids is, iif that were possible, they'd still have a kid with severe intellectual impairments, just a more neurotypical one.

The thing that puzzles me about parents who want to remove autism from their low functioning kids is, iif that were possible, they'd still have a kid with severe intellectual impairments, just a more neurotypical one.

Sorry but that’s nonsense. Intellectual impairment is a feature of severe infantile autism. You can’t just separate the two. Besides which, there are many kids with ASD who are extremely bright but severely impacted by heavily impaired communication and social skills - one of my twins would definitely fit into this category. His understanding of the world is excellent but it’s as though he just doesn’t understand that words are a thing.

@sinkgirl but it just isn't there in either the criteria or the triad.

And, maybe your twin really doesn't. I don't think in words myself. I've often wished we had a better alternative than this stupid code.

Sorry to upset you @gamerchick but we sat in rows and nobody had meltdowns or dared to misbehave. So where were these children?

I was one of those children. I never misbehaved and was academically gifted. I was also a mess between the ages of 12 and 16 when people stopped being as tolerant of my ‘quirkiness’. By mess, I mean a severe eating disorder brought on by distress. Because nobody would have thought that a high-flying girl had a form of autism I had some very unhappy years and remembering them still makes me feel very bad. I’m 55 now and have been successful in my career and have a loving marriage.

One of my bugbears of being mum to a teen asd girl is everything being attributed to hormones by people with little knowledge, do mums of teen boys get this too?

Due to the internet, SM, parent groups etc. it can all seem more common nowadays but actually in RL, if you took away all of that, would it seem so common?

A few weeks ago my DD had a sensory overload in the supermarket, she was convinced she couldn't go out again. That same week on Hollyoaks a character (played by an actress who is autistic) had a sensory overload at a festival. That is the first time, ever, she has seen someone in her age range react in the same way she would by curling up and shutting down.