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.

Where were these children in the 70s and 80s?

Outside the head's office waiting for the cane, or in the corner of the classroom in disgrace, or in tears in the playground while the dinner ladies told them to toughen up. Or as a pp said, quietly getting on with their schoolwork and saving up their stress and anxiety for hometime.

Of course these kids existed before widespread diagnosis, ffs.

Or in an institution Greensleeves certainly my son might have been but thankfully we don't lock people with severe disallities away these days

God there is so much shot in this thread .

No one with a Adhd or Asd diagnosis paid for a diagnosis . My Ds is on the waiting list for assessment for asd and has been on the waiting list - about 18 months . So yes people do pay to move things forward.

I am yet to meet anyone with a child with additional needs in order to claim higher benefits

Yes some parents of children with asd and or adhd don’t parent well but when every behaviour challenged results in meltdowns sometimes people don’t know how to move forward . That doesn’t mean there children don’t have adhd or asd.

My own Ds diagnosis included a classroom observation, questionnaires for myself and teacher , a computer assessment ( an test) and discussions with consultant.

Yes some parents of children with asd and or adhd don’t parent well but when every behaviour challenged results in meltdowns sometimes people don’t know how to move forward . That doesn’t mean there children don’t have adhd or asd.

Absolutely. We spent today with friends and the oldest DC has recently had a diagnosis. Watching them today, without a doubt there are battles I'd have picked that she let go. But she's doing it solo, she's exhausted and she simply parents differently to me. None of those things mean her DC doesn't have Autism; they absolutely do. Different parenting techniques are because each parent just does their best. You can sit from a comfortable position telling people how you'd do differently - and you might - but the next person might be doing their level best with the skills, energy and support they currently have and judgemental bollocks helps nobody.

If you can't offer kindness, a cuppa or just a smile, shut up until you learn to be nicer.

Dd had a headteacher who didn't believe girls could be autistic (11 years ago) she lost her job following my formal complaint a d intervention by my mp (like so often it was framed as early retirement but she didn't have a choice, horrible woman)

Clinical diagnosis is the term you mean I think when you say mental illness. It doesn't have any concrete markers or a physical test you can do (yet) so essentially it's down to grouping a cluster of symptoms and naming it a disorder. In that sense it is "made up" but it is real, diagnosis is valuable and it is important to be recognised.

X2boys I'm perfectly aware Autism is a spectrum. Both my dc have Autism...... And I've come across some right horrors over the years (( the parents, not the kids)) just like any group of children some parents of children who have Autism don't want to put the work in. And those children suffer massively because of it.

I was 45 when I was diagnosed with aspergers. I was beaten and abused by my foster mother in order to ensure I behaved when I was a kid.

People with neuro diversity have high rates of suicide, lower life expectancy, struggle to remain employed and with accessing healthcare, education and housing. We are on the very margins of society and still neurotypical people deny we even exist and begrudge us even our identity.

@x2boys To be fair my son did get a diagnosis very quickly and he was three and a half ,but it was blindingly obvious and he does have very complex needs

Exactly the same for us.

It doesn't have any concrete markers or a physical test you can do (yet) so essentially it's down to grouping a cluster of symptoms and naming it a disorder. In that sense it is "made up" but it is real

The symptoms are real. But we have no way yet if knowing is autism is a "real" diagnosis. There may actually be a number of disorders that we currently lump under autism.

My ex MIL is in denial that ds is ASD, she has been sounding off that there is nothing wrong with him ever since he was diagnosed, she thinks that I faked his symptoms "to claim disability benefits for him" but then again she thinks that ME/CFS doesn't exist & "I use it as an excuse to not work, lie in bed all day & claim loads of benefits"

It's true that there weren't many kids with ASD & ADHD when I was a kid, they were the kids that either spent all lesson in the corridor or had the life bullied out of them because they were quiet & never wanted to join in anything. I'm half way through being assessed for ASD at the age of 53.

For those of us lucky enough to have little real life exposure to ASD and similar conditions, the hard part to comprehend can be the breadth of the diagnostic criteria. I don't think anyone doubts ASD exists but it's easy to wonder about the number of people diagnosed.

As a lay person reading the criteria some of them look like they cover not only severe impairments but also some traits that sound like they can be displayed by NT people, within the normal range of human variability. As the diagnostic criteria get expanded, I know I've been guilty of wondering where the line gets drawn around the edges, in terms of distinguishing between NT people who are perhaps a bit odd at times, and people with a clinical disorder. I don't like the idea of there being no room for people to just be different without being "diagnosed" with something, I supposed.

Sorry, not intending to offend anyone here and probably haven't explained myself well at all.

@manicinsomniac sorry, just saw your comment. Regression is common with ASD - it used to be believed that there were two fundamental types of ASD, one that is present at birth and one that causes regression. Since then they’ve found that actually those who regress did show signs earlier.

They’re really not sure what causes the regression - I wish I knew. But it is a reasonably common feature of ASD. It’s not that they were NT at first, though.

@NoIDontWatchLoveIsland
Can I answer some of your post?

For those of us lucky enough to have little real life exposure to ASD and similar conditions, the hard part to comprehend can be the breadth of the diagnostic criteria. I don't think anyone doubts ASD exists but it's easy to wonder about the number of people diagnosed.. Firstly and not angrily at all but just so you might gain a little insight, I really don’t think you ARE lucky to have no exposure to anyone with ASD. It’s a bit like saying ^those of us who are lucky enough not to have any exposure to children, or people from a different ethnic background or people of a different sex. It can be difficult if your life is set up for a NT child and you get a neurodiverse one, but only in the same way that it might be if you were expecting one and got twins or triplets.
The criteria REALLY isn’t broad, it’s very defined. What you are seeing as a broad criteria is actually the breadth of human experience. So just as you might be able to describe someone as a “wheelchair user” you would understand that that grouping would include people who could and couldn’t speak/work/care for themselves, people who could race in marathons and those with electric wheelchairs, those who were also blind/incontinent/physicists/survivors of accidents......and some will be charming and witty, and some grouchy and unkind. It’s the same with Autism. It describes one aspect of who they are, but you get all sorts.

As a lay person reading the criteria some of them look like they cover not only severe impairments but also some traits that sound like they can be displayed by NT people, within the normal range of human variability.. My son is fairly severely impacted by his autism. I don’t think ANY of the “traits” he displays aren’t seen in the NT population. The difference is context and severity. Eg if you saw a a child knocked down in the street in front of you, you might cry, rock from foot to foot or wander aimlessly. You might “wring your hands”. You might experience shock and what we now call ptsd for weeks afterwards. You will have experienced trauma through witnessing horror. My son exhibits the same behaviours he is just tipped into that level of distress by much much smaller things. (Eg a sudden noise, a lost toy, no spaghetti on a menu).

Does that make more sense?

I forgot to add above, the sudden regression seen in some children with ASD is the reason that vaccines were considered a cause in the first place. If regression occurs it’s typically between 12-18 months, around the time that most are vaccinated. If my twins experienced the same regression shortly after a vaccination, I can understand how you’d link the two, because for one twin especially it was pretty much overnight, but this was more than 6 months after any vaccinations.

It was the same week he started walking properly that he regressed - did that trigger something in his brain, did his focus shift? He’d recently come off a medication he’d been on from two weeks old - was that a factor? He had other complex medical needs, did any of those contribute to the regression? I honestly have no idea, but I do feel like a big chunk of him disappeared overnight. I have this video of him copying all sorts of things as a 10 month old - clapping, saying dada, blowing raspberries. He’s 3 next month and he can’t do a single one of those things now (or rather he won’t - he can clap, he just doesn’t). It’s excruciating.

As for people saying that many of the criteria seem to be NT quirks, it’s not just one trait that will get you an ASD diagnosis - you need to be impaired in three distinct areas. I have many ASD traits I now realise, but they’ve never prevented me from living a normal life - they have impacted my ability to make and keep friends, hold down a job etc but I’m married, have a degree and so on. Do I have autism? No idea. I’m not going to pursue assessment, I don’t think it would benefit me at this point. If that changes I will.

5zeds

Thanks for responding. You make a really valid point about use of the phrase "lucky". I wouldn't want to diminish the challenges you & some of the others on this thread face.

I completely understand what you mean about your son & the severity. There's obviously a range tho. Occasionally you will hear about people who are diagnosed as adults, having made it to adulthood with good careers, friends etc... now of course perhaps those people have benefited from atypical circumstances where their lifestyle & support have unknowingly suited them & helped to mitigate their difficulties. But it's hard, some people clearly need a huge amount of extremely focussed help, but it seems for some individuals things like the modern school system worsen the problem. My brain wants our society to tolerate that different systems might accommodate a wider range of people without classifying them as in some way disabled or impaired.

(Again sorry for any offense this is hard to articulate)

I know what you mean. I do think ironically that in some ways there is less tolerance of human difference now. You see it on here. Any difference in human behaviour "must" be because of a SN, rather than that difference is just part of ordinary human variation.

My son has classic, severe non verbal autism. He also has severe learning disabilities. He’s like a toddler in a mans bidy. It’s easy to see. Until the age of 14 he was also the easiest child ever. Never had any sort of meltdown. When people meet him and ask and I tell them he’s autistic I usually get “oh I thought autism was just naughty” autism is a social and communication disorder. Not all autistic children have meltdowns!

Of course there’s a profound difference between some diagnosed as an adult and someone who has needed focused support since early childhood. There’s also a profound difference between someone who is deaf and someone who is deaf blind, or perhaps someone who is deaf who works by email and someone who is deaf who works by phone?

I’m fairly unusual among the families I know living with autism, in that I am deeply concerned about the melding of Asperger and autism into one homogenous ASD. I worry about the less articulate and less intellectually able and that they are being even further marginalised. I hear less and less about autistics who are more dependent with limited verbal communication or LD or both and yet know they form the majority of the autistic population.

MissPollyHadADolly19

An EHCP is for children who have or may have SEN, the threshold for assessment is very low. A diagnosis may help but doesn’t guarantee one. You can apply yourself. Many LA’s will refuse to assess though. Most parents then appeal. Have a look at the IPSEA website for information. It can be a long road and LA’s act unlawfully all the time so you need to be on the ball. There are lots of EHCP help pages on Facebook. We went through an appeal last year, my son is an adult now. It was emotionally and financially draining. The battles never stop unfortunately x

Absolutely agree 5zeds. I’ve already been called awful things by some autism activists - on the whole those who were diagnosed as adults or even self-diagnosed. I am certain they have faced challenges relating to their ASD but they are not the same challenges we are facing. I’ve been called a terrible mother for wishing my kids weren’t autistic but of course I do - autism is preventing them from managing even the most basic social and communication skills.

Unless something changes dramatically in the next year, they can’t go to mainstream school - they don’t understand any words. There’d be no way of them passing under anyone’s radar and they were diagnosed at 27 month and 29 months old, in two appointments and one appointment respectively. Of course our experience is different from those who’ve managed to get to adulthood without a diagnosis - doesn’t mean it hasn’t been hard for them too but the problems are worlds apart.

SinkGirl - me too. I’d chop off both arms to take away my son’s autism. He’s not quirky or neuro diverse. He’s severely, mentally impaired. He’s an adult now diagnosed at 3, assessments started at 19 months. He’ll never live anywhere near independently. He has 2:1 support at college 24/7. When at home we don’t leave the house as he’s too difficult. His life is limited, our lives are limited, we don’t have friends to socialise with as they all dropped off years ago. He needs supervising 24/7, he doesn’t sleep. Can’t see to his basic needs. Our other children have very different lives to their friends although they are very independent because of it. That’s just the tip of the iceberg.

I’ve already been called awful things by some autism activists - on the whole those who were diagnosed as adults or even self-diagnosed.
Yes me too. It’s part of the marginalising to refuse to hear the voices of the parents of those who can’t speak for themselves. There seems to be an idea that an adult verbal autistic are better advocates. Sadly many of them have little understanding of the life of autistics who don’t have similar profiles to their own and even less interest in learning about it. I think it’s fairly inevitable that the impact of later diagnosis and trying to pass for nt for years with or without misdiagnosis along the way, makes people combative and territorial, but while I sympathise on one level I think the frankly brutal silencing of an extremely vulnerable part of the community is shocking.
Most people would not wish their children to experience anxiety, stress, and pain that is the day to day for autistics.

Sink I would stay away from those groups tbh, if they can't be supportive they are not helping anyone , my son has always gone to a special school,I remember really wanting him to go to mainstream by the would never have coped it's the best place for him.