Autism rate unbelievable

[OneShyLimeBird]

I don’t mean to sound insensitive, but the rate of autism has increased so much that I am doubting my own high functioning diagnosis, and the diagnoses of many others. The meaning of autism has expanded so much that virtually every other child has it. It used to be so rare, I’m not saying your child doesn’t have needs but you used to have to meet a much higher threshold to be diagnosed with autism that it’s now lost all meaning. It can’t all be autism.

Ah ah ah. Don’t start accusing me of anything. You needn’t tell anyone “autism” if you don’t want anyone to know It is so hard to get PIP for autism or get help from services because autism is such a spectrum, and assumptions are made about your abilities or inabilities. It creates so much stress and worry, and would make so much more sense to have other terms for certain needs.

Yes, people like you are the problem because you want to be able to make assumptions about someone's abilities or inabilities just by hearing the word autism, it bothers you that you don't get to know the persons exact issues. Tough!

I have a child with autism and as I said previously, I have a friend with 2 kids with autism who present differently, it doesn't cause either of us stress that they all have a diagnosis of autism, I make no assumptions...you should try it, We both have DLA/PIP for our autistic children, there's enough room on the form to details their individual struggles. You just don't need to know them.

Imagine having seperate diagnoses that detailed their particular support needs and cut out the need for all these forms, waiting lists, doubts, stress, worry, and so on. And then you could keep the diagnoses private for those who need them.

I held down a job, I can drive. I have difficulty functioning in the world.
I get agitated if my routine is disrupted. I have had a panic on a roundabout with a tram coming towards me. I frequently cooked for my children, not for myself. I lived in an abusive marriage for over 20 years because I didn’t recognise the red flags.
I had my office carpeted and the lighting changed so that I could hear patients talking to me and not be distracted by the noise of the strip lights. I need help to do something new. There’s so much more but don’t you @OneShyLimeBird be telling the DWP that I, and others in a similar situation don’t need PiP because many of us absolutely do.

That's also the reason why we need a differential between the types of autism.

If 10% of those who are autistic have very severe needs, 40% moderate needs and 50% low needs, then we need those stats for planning out things like education. There is no point shoving someone who needs peace and quiet in small class sizes but is otherwise relatively fine academically in the same type of SEN school with someone who is totally dependent on others for all needs and has no idea where they are.

Also when there are SEN groups around, you need to know what level they are catered for to make sure that they are suitable for your child.

Having levels let's you work out how to spend resources more efficiently.

I didn’t say that you don’t need PIP or that you don’t have needs, I said that you shouldn’t share the same diagnoses as someone who can’t do any of that

I cannot let your harmful nonsense go unchallenged.

I have a job, can drive, own my home. According to you, I shouldn't get a diagnosis, right? Wrong!

• I have been disciplined and fired because I didn't know how to talk to people at work the right way.
• I have been sexually assaulted multiple times because I don't know how to interpret men's and boys' intentions, nor how to extricate mysef from risky situations without provoking the man or boy into physical violence. 90% of autistic women are sexual assault victims, compared to one in three of all women.
• There are clothes shops I can't go into (River Island, for one) because the music is so loud.
• I have had meltdowns in supemarkets shopping for food. I largely live on Huel to avoid this.
• I will never marry nor have children because I cannot live in the same house as someone else.
• I have many scars from self-harming during the earlier phase of my life where I had to live with others and wasn't coping with it.

The idea that I don't merit a diagnosis is absurd.

I said different support needs should have a different diagnoses not that you shouldn’t have a diagnoses and not that you don’t have support needs.

Imagine having seperate diagnoses that detailed their particular support needs and cut out the need for all these forms, waiting lists, doubts, stress, worry, and so on. And then you could keep the diagnoses private for those who need them.

That wouldn't work. Autistic people's profiles are so different that you can't fit them into neat boxes. You'd need so many different diagnoses that no one who needed to know would remember what they meant.

It makes much more sense to say autism where needed and go into detail of their very individual needs where necessary. We can still keep diagnosis private.

https://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/ If people understood this cartoon, "autism spectrum disorder" would suffice.

If 10% of those who are autistic have very severe needs, 40% moderate needs and 50% low needs, then we need those stats for planning out things like education. There is no point shoving someone who needs peace and quiet in small class sizes but is otherwise relatively fine academically in the same type of SEN school with someone who is totally dependent on others for all needs and has no idea where they are.

Oh yes because there are all these varied special schools with varied adaptations that grow on trees , they just didn't know exactly what to cater for.

Obviously EHCPs , documents , professional referrals and recommendations, parental information and views are just not good enough. All we need is type 1 autism rather than type 2 or 3 and bam! It's sorted.

I mean, empathy isn’t my strong suit 😅 but I don’t think the comparison is the right one - if you’re talking about cancer (I don’t love the analogy, but anyway) I think Stage 1 as opposed to Stage 4 is more like it.

I’m autistic. I’m also running a successful small business (albeit very much on my own terms), have friends, do some things at a high level which people would not associate with a person with autism.

“Both stage 4” doesn’t seem to work here. If someone’s daily life is severely curtailed by autism, their experience of it will not be the same as mine and I suggest would be objectively worse - unable to do self care, unable to communicate needs, for example. What I don’t like is the idea that someone looks at me as someone with a diagnosis and says, Oh yeah, that geeky woman with a bunch of obscure degrees who’s really into Lego - and expects my autism to be the same as the autism of someone who is, for example, non verbal and who sensory seeks with their own shit. It’s rain man territory - oh, your son’s autistic? What’s his special skill?

I really would prefer HFA / Asperger’s as a label. I can’t speak for anyone else but that’s where I’m at. Maybe the only conclusion is “If you’ve met one person with autism, you’ve met one person with autism.” But that’s a hard message to communicate to every Joe Bloggs on the street.

And yet I know that if tomorrow the diagnosing criteria changed to A1 through A4, that wouldn’t be a solution either, because our lovely government would see fit that you had to be A4 before you saw a penny of help.

Clear as mud!

No I cannot find anything saying 1in 3 children have autism. Links please.

I have two friends with MS. One works full-time and is relatively ’well’ at the moment. The other is completely immobile and has to be fed puréed food, washed etc. They both still have Multiple Sclerosis. Most conditions have varying levels of severity but they’re still the same condition.

This. My diagnosis didn't come as a single word "autism", it came as a six-page report describing how being autistic affects me. That's not going to break down into categories neatly.

Sure, but neurodiversity isn’t an illness. (My main bugbear with the cancer analogy.)

And yet I know that if tomorrow the diagnosing criteria changed to A1 through A4, that wouldn’t be a solution either, because our lovely government would see fit that you had to be A4 before you saw a penny of help.

That's a real issue. I also bet my last penny they would make it as hard as possible to actually get an A4 diagnosis , scrutinise every single word on it looking for that AHA! He said his first word, obviously doesn't qualify anymore moment.

People imagine streamlined processes and suitable and tailored help where it's needed. The reality would be hundreds and thousands failed and falling through the cracks. We've been there, done that. Hell, we have been doing it for dozens of years.

Maybe the only conclusion is “If you’ve met one person with autism, you’ve met one person with autism.” But that’s a hard message to communicate to every Joe Bloggs on the street.

A random on the street doesn't need to know though. As long as the people it impacts know and they can share information with those who need to know, I think that's as good as it gets for autism. There's simply too many different profiles/presentations to fit into neat little boxes. Just because you can do that with other things, it doesn't mean you can for autism. People really seem to struggle with that.

In a neurotypical society, it might as well be one. Social model of disability and all that.

I am Autistic, whichever way you look at it that’s the way it is. I share my dx with loads of other people, some who can function better than I, on a given day, and some who can’t. The fact is that we have some symptoms in common and therefore we share a dx.
I also have EDS and I use a wheelchair, a powered chair because my shoulders sublux. Dd uses a manual chair, her shoulders are better than mine. Her twin doesn’t use a wheelchair at the moment, but frequently dislocates her ribs, hips, gingers shoulders etc. We all have EDS.

(Fingers)!

Sure, but neurodiversity isn’t an illness. (My main bugbear with the cancer analogy.)

I don't think people are trying to be insulting or calling autism an illness, just that using concrete afflictions shows up the ridiculousness of some arguments better.

We all get headaches, but no one has ever said "oh we all have a bit of glioblastoma" yet like they do with neurodivesity or SEMH issues.

Not necessarily, we work with children and sometimes they have private assessments. A child I worked with didnt have any school observation because he wasnt there, hadnt been to school for 3 years but prior to that the school feedback was unremarkable, nothing of concern.
The history was given in terms of milestones but no specific history of ASD traits, no SALT as it wasnt a need of his. The assessor saw him once, at home, he was very difficult to engage and he had 2 of the 3 triads and he received a diagnosis. He moved soon after that out of my team so I dont know what his presenting needs are now.

Not necessarily, we work with children and sometimes they have private assessments. A child I worked with didnt have any school observation because he wasnt there, hadnt been to school for 3 years but prior to that the school feedback was unremarkable, nothing of concern.
The history was given in terms of milestones but no specific history of ASD traits, no SALT as it wasnt a need of his. The assessor saw him once, at home, he was very difficult to engage and he had 2 of the 3 triads and he received a diagnosis. He moved soon after that out of my team so I dont know what his presenting needs are now.

So they had looked into past schooling, the fact he was not attending school, history was given, assessor met with him and that was communicated within a team. A bit different to one zoom call.

When my child was diagnosed privately, we had an initial appointment to see if assessment was worthwhile, questionnaires, 2 appointments for detailed history, ADOS assessment, SaLT assessment, a further SaLT appointment, 2 GPs involvement, school observation, 4 teachers reports, then a final meeting to tell us the outcome of their assessment. Everyone I know through various groups had similar. It's bullshit to say it's diagnosed in a zoom call.

Yes, but I didnt take the post to mean literally one zoom call, all the other bits are in the background

She didnt work in a team by the way, she was a private consultant. Not that that makes any difference.

I remember assessments for all sorts of things happening during lockdown via zoom/teams so, no I dont find that posters post unbelievable at all.

The poster said 'a single zoom call'. It's bollocks, along the lines of 'labels' are 'handed out like sweets'.....have we had that yet on this thread? My bingo card will be full if we have.