Anyone else noticing the uptick in open hostility towards people with ASD?

[FFSakeDrinkSake]

As the title says. It feels like it's open season recently. In the last few weeks alone I've seen many threads questioning the validity of Asd, the credentials of those diagnosing the condition, the 'explosion' of diagnosis', the 'fact' that you qualify for extra benefits if you are autistic and/or have ADHD, the apparent drain on resources kids with ASD have on the educational sector depriving others and most recently the idea that someone (self diagnosed) can 'outgrow' autism. Most of which contain the worst misinformation about what we're trying to deal with on a daily basis and making it sound like we're just trying to .. i dont even know tbh.. scam our way through life?

Disclaimer NATAAT.

But you aren't understanding. No-one is saying he is ONLY his disabillity, but it is a big part of him.

Without those aids would he be able to live his life? Have his career? Thrive?
If so, that means his life does 'revolve around his disability.' He needs that access.

I completely agree that sometimes there is hostility from autistic adults towards parents of autistic children who are severely disabled. And it's wrong.

But you could look at my DD in a RAP queue and think 'she looks fine, she doesn't need this.' And you'd completely miss how disabled she is by her autism. She can't access a full education, I'm having to care for her a lot of the time because she can't be in school, she can't do any activities like other children, walk to school like other children, be independent. Everyday feels like a battle just to get her through it. She could never access a theme park without a RAP (and even with it she can't do a full day) and just because she can mask sometimes she shouldn't be laughed at and seen as a 'second class' disabled person.

And no @lovelysunshine22 sometimes disabled people can't just 'get on with it!'

But for some their whole lives are impacted by autism and will be for the rest of their life.

I understand what you are saying about ocd but there are people or families for whom that can't happen. No positives just all the negatives of it.

Your son having a carer is great and should be celebrated but you have to understand that there are some families where with te best will in the world, every type of intervention, every accommodation that this won't happen and we'll still be shopping at the baby toy aisle when they're 25, 30, 40....

It reminds me of the whole "i got the fun math autism" trope. rather than the debilitating kind....

I’m also glad we’re engaging respectfully, I have absolutely no wish to dismiss the experiences of families with children who are severely disabled.

I do appreciate that I have privilege in that I can be articulate and express myself, and that my dc may live independently in the future (they may not, but for us there is a possibility of that, which may not be the case for your dc).

I would never want to suggest for a minute that you don’t love and value your child. It’s obvious from your posts that you do.

I think where our perspectives might differ is that I can’t separate autism from the person, or see it as a separate entity that is harmful, like an illness. Autism is me and I am autism (I won’t speak for my dc there as they might also feel differently. They don’t all have an autism diagnosis either and one doesn’t want one, but does have other diagnoses).

I do completely respect that you might disagree with that perspective. But I think I would see any positives about me as a result of my autism as much as the bad.

My dc don’t have superpowers or special abilities. They’re not rain man. A couple of them are extremely academic, a couple average with a spiky profile. If anyone is rainman like it’s me, as I am academically very strong in some areas and thick as pig shit in others. I can’t do a four piece toddler’s jigsaw but my language skills are strong.

We do have a lot of negatives. I am fairly identifiable here and don’t want to breach my DCs’ privacy. But we have had violent meltdowns, broken bones, mental health crises, periods of being a prisoner in the house for weeks on end, broken furniture, severe eating disorders, inability to attend mainstream school, impact on my ability to work, hostility from professionals, self harm, very rigid routines that conflict with others’ needs. And nobody other than parents can care for the dc, although that is improving to some degree (touch wood). So we have had our share of negatives. There have been times when I’ve

My dc are wonderful young people, as I’m sure yours is. They don’t have any obvious positive talents resulting from their neurodivergence. But they do have very positive things about them, that i don’t believe I can separate from autism / neurodivergence.

I guess they do have things like sense of justice, high levels of empathy, creative thinking and joy in special interests. If they had none of that, they wouldn’t be who they are… so it’s hard to imagine. But i can’t say that I would feel any differently than you do. I can’t tell you that you’re wrong to see no positives, because i haven’t been in your shoes. I hope i would see positives, but i think it would be incredibly patronising of me to pronounce that with authority.

Does that make sense and answer your question?

@Noras I completely agree that just labelling everyone on the spectrum as ASD is unhelpful because it is a huge spectrum ranging from severe disability to minor social/emotional problems.

@Perzival I completely understand that autism is whole spectrum of disability. However regarding my db physical disabilities what i meant was it was never a big thing in our lives ( and believe me he spent many months in hospitals, many months of painful physical interventions and many huge operations) it was just how it was and he was never raised to think he was any different or special in any way. I took the same approach with my two ASD ds, they were raised exactly the same as my other dc.

I work as a lawyer on disability benefit appeals. Nobody will get an award of DLA without ample evidence. I promise. Even then, it’s difficult to navigate. A diagnosis doesn’t equal DLA.

Very few dc with an autism diagnosis will receive an award of £700 a month.

Disgnosis is in no way a passport to dla. The only way it helps is that there will be a diagnostic report that can be used as evidence of need. But that is equally true of a report that doesn’t diagnose. And because the reports usually outline the positives, they can also be used to deny an award.

I think this is where we have difficulty. Please respect what I put now and understand that I'm just trying to explain a point and view and I do so knowing you will have a different opinion which you are entitled to have.

Some people with autism are more disabled than others. Not everyone with autism has the same level (for want of a better wording- I'm shattered) of disability.

Your daughter sounds like from previous posts too (could be completely wrong so please forgive me if that's the case) that she is able to do at least some things independently while she still needs a substantial amount of support.

Her autism from your posts sounds different to a person who vocalises, flaps, can't control movements, has no self help skills etc

While I understand your daughter is disabled, no I don't think someone like that is as disabled as the other described.

It's not second class disability it's just not all disabilities are as disabling to everyone even those with the same dx. Even dla/ pip has levels. Educational support has support prior to ehcps.

Yes I agree there is a lot of tension between those with autism and those who have a child with profound needs.

I wont hide my views to avoid conflict and I know you won't agree with what I've wrote and I probably won't agree with your views but hoping we can continue to engage in some sort of respectful way.

We seem to be playing ableism bingo here.

It absolutely isn’t a spectrum from mild to severe. It is a spectrum of different needs. So one person might have severe difficulty with verbal communication and motor skills, another might have severe sensory needs whilst having strong verbal skills.

There is no universe in which ‘minor social / emotional problems’ describes a person with autism.

@WaitingForMojo again I completely disagree! My youngest ds gets high rate care and low rate mobility pip at just over £500 per month! I have never sent any evidence other than his diagnosis and his EHCP. I did provide his consultants name and contact details on the form as well as his GP's...neither have ever been contacted by DWP ( i know this because i have asked them).

We seem to be playing ableism bingo here.

It absolutely isn’t a spectrum from mild to severe. It is a spectrum of different needs. So one person might have severe difficulty with verbal communication and motor skills, another might have severe sensory needs whilst having strong verbal skills.

There is no universe in which ‘minor social / emotional problems’ describes a person with autism.

@WaitingForMojo I completely disagree

I respect your views completely.

I would add that when my DCs’ needs aren’t met (or mine), they (we) become completely unable to function, non verbal, uncontrolled flapping, unable to do personal care etc.

I do appreciate that your dc might never be able to do any of those things no matter what anyone does, however.

Tere is a universe where some people have severe problems in all areas though so while I understand autism isn't a straight line, I also understand that for those who care for the most impacted someone who is verbal/ socially awkward can be seen as a minor problem in comparrison.

They rarely contact the professionals involved. Your evidence must have been sufficient, with the EHCP detailing support required in school and the diagnostic report providing sufficient info.

It’s great that you were awarded without issue, if perplexing when you say your dc has no more care needs than anyone else.

But I promise you that I have seen hundreds if not thousands of DLA and PIP applications and it isn’t given out based on diagnosis. Although it is true that DLA is easier to secure an award than PIP.

My DS and DD both have the top awards for DLA.

DD can independently use the toilet and sometimes get dressed. She is able to eat independently. There is very little else she can do independently. She can talk. But her emotional/maturity level is much younger than her age. She will probably never be fully independent, although I hope for progress.

I know that is different to my little nephew who is non-verbal. But he has been given a special school meaning he will be able to access his education unlike my DD who isn't able to access her education. So in that way she is more disabled than he is. This is where it is more complex than it may seem on the outside.

I hope you don’t mind me asking this and again, I want to be respectful, I’m genuinely interested in your perspective.

I know a lot of people say that in these cases, the issue is a concurrent learning disability rather than the autism itself? Or other co-occurring conditions. I wondered whether that reflects your experience, or do you feel that it’s the autism that is overwhelmingly negative for your child?

I do think there’s a risk when people say this of ‘othering’ and distancing non verbal / learning disabled autistic people from the rest of us and therefore not advocating for them.

I also know that the negatives for at least one of my dc could be attributed to concurrent mental health difficulties etc, when actually I think these things are part of their autistic presentation.

But that isn't what the spectrum means for autism. That is just a fact.

Are you suggesting im lying? Thats very ignorant of you to suggest that!

I have to go out but will answer this later. I just don't have time to write what I want to and word it well now but will do in a couple of hours.

No, I’m suggesting that the two things don’t add up.

Because in order to claim dla you will have completed the application form detailing the care you give to your dc. If you’d said what you’ve said here, which is that your dc needs no more care than anyone else, and can just get on with things, it’s unlikely you’d have received such a high level of award.

Unfortunately we do live in a society where a few people do believe they can chase an ND diagnosis for their badly brought up and badly behaved children.

If you don't believe that you are very much mistaken.

Awful but true.