Autism

[lolly07766]

I know there are many threads concerning this subject, I've just read one now.
I have a son with severe autism, limited communication and obvious learning disabilities, aibu to think the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities.

I do wonder if neurodiversity is the breakaway movement, citing itself with a host of other neurotypes, where diagnosis won't be necessary just self id, leaving diagnosis to people negatively impacted rather than different?

That’s a fantasy of the self-IDer. Mainstream society will never actually accept autism is just a difference and not either a disability that requires a medical diagnosis and professional support, or a convenient excuse by someone perfectly capable of controlling their behaviour to act out.

I keep calling it autism genome but it's proper name was spectrum 10k.

I'm not sure walkaround I'm seeing terminology and workplace conversations shifting. It's definitely taking hold in some way as a mainstream term.

I have go disagree with this. I've seen many especially young adults and their families peddling the different stance rather than disability. The Chris Packham doc also made a point of point of saying the most impacted have comorbid ld which isn't always true. Also Greta Thumburg with her super power, the Einstein, Dan Akroyd, Darryl Hannah etc memes. It is all contributing. I think to dome extent parents have some of the blame too, I can see why if your child is only ever so slightly impacted you'd want them to view it as a difference and push for that view in their eyes and others.

The more it is accepted and acceptable to self Id and that conditions like autism etc are a difference not a disability the further from disability we go.

Yes, I can see how in the current climate, where free debate in almost every walk of life is being suppressed, this can happen. Isn’t it part of a wider trend, though? Just thinking of arguments around Down’s Syndrome, for example, where the degree of seriousness can vary massively and it is not possible to tell before birth how affected a child might be. And then there is the violent debate around abortion. With or without autistic people themselves disagreeing with each other and the wider community, can you really say it was just another part of the autistic community that stopped the research and that this would not have happened if they had been told it was none of their business because it’s not their diagnosis?

@Walkaround yes I can, have a quick Google of "spectrum 10k stopped".

The tag #stopspectrum10k is also worth looking at.

I think it was a focused campaign
en.m.wikipedia.org/wiki/Spectrum_10K

But all I can see is that it was paused and now has the green light again, but does have to take the fears of the autistic community into account. I’m sorry, I know it is inconvenient, but until the research has been done, you do not know if there is any genetic difference to justify separate diagnoses of profoundly affected autistic people and higher functioning people - the research needs to be carried out on both groups, you can’t deliberately exclude people from the research just because they are capable of advocating for themselves, and to be able to include them you have to listen to their views. The research is needed because without it, the patterns are not clear and the connections between those profoundly affected and those better able to function are unclear, but that does not mean they are actually distinct groups whose interests do not in any way intersect.

The need for the profound dx isn't based on the genetic study. It was based on a consortium who were drafting a 5 year plan for the Lancet. They recognised that the profound group were being marginalised because of autism self advocacy and were missed from research snd services. The move to create the profound group is to ensure that their needs are met and that they are included in research.

The research as it was initially I'm the 10k project was important as it was looking at comorbid conditions and gathering genetic info on their occurrence.

Sbc who was leading the project isn't a fsv of the autism community due to his earlier theories on male brain/ empathy so there was already a backlash waiting to happen. He was incidently recognised with a knighthood not long after the Queen past away.

Also no one was being excluded from the research. It was autism advocates that wanted it stopping because of fear thst the information would be used for eugenics.

In regards to genetics I do that if a gene was linked to more profound autism what would happen to others with the autism dx. It would open a huge can of worms. Can you imagine how people would react that didn't have the gene?

I do think genetics is a huge part and will likely show a number of diff dx thst are currently under the autism umbrella in the years to come.

but that does not mean they are actually distinct groups whose interests do not in any way intersect.

I agree and as you've seen actively seek others experience to try to gain insight even if I do take it with a pinch of salt but it doesn't mean they aren't distinct groups either at least genetically and we can't ascertain that if the research keeps getting restricted or changed.

I do see your stance but I feel like your not seeing or admitting that the more vocal autism community can advocate to either protect their view of autism even at the cost of the most profound or in a deliberate manner. I'm wondering with myself if the possible deliberate nature of some advocates feeds into my own advocacy of the split dx or at least the inc of profound autism. (My own pondering shared not a dig).

And I would still argue that the profoundly autistic group have always been marginalised and have never attracted huge amounts of research or support services and probably still wouldn’t were it not for the fact society now thinks “autism” might affect more people than previously thought and might therefore be worth setting up big projects for. Unfortunately, this increased interest does not come free of complications and unwelcome interference.

“I do see your stance but I feel like your not seeing or admitting that the more vocal autism community can advocate to either protect their view of autism even at the cost of the most profound or in a deliberate manner.” I do see it - as I see it with the whole gender identity debate and with society’s tendency frequently to defer to the argument of those who argue most aggressively.

spectrum10k.org/consultation-update/

The link to express interest doesn't work so I assume they've removed it.
I'd never heard of 'autism inclusion meets' who seem to have driven the campaign against.

Thing is, if I could have been born without autism, and spared my kids, I would 100% have done it. No question at all.

And I would still argue that the profoundly autistic group have always been marginalised. We’ll disabled people have been marginalised within society but the original Kanner described autistic were profoundly autistic surely?

@OneFrenchEgg I understand that feeling, i'd do anything given the chance if it could be taken away from my son too.

I think they did, research at least but that has been somewhat diluted since the umbrella dx hence the Lancet report to refocus and ensure that they aren't further marginalised. It was a big theme in the 5 year plan.

I've just seen this thread incase anyone else is interested.

www.mumsnet.com/talk/am_i_being_unreasonable/4750077-severe-autismcan-we-talk-about-it?page=3

If the profoundly affected genuinely were better served before and the changes to provision were not actually just due to austerity and looking for excuses not to provide what anyone can see is plainly needed, then yes, something needs to change. It is, however, hard to believe that a failure to provide for someone non-verbal, incontinent, etc, is anything other than wilful and cruel and not really linked in any way to a change in classification of autism.

The refusal to allow people to talk about the severity or to accept that autism is a disability dedinitely needs to change (and could and should change regardless of any recategorisation), as it is not just the profoundly autistic this harms, it harms the whole of society.

I have no problem with the notion of giving someone a diagnosis of “profound autism” if this really helps that specific group, but I don’t want that to be the start of a return to random and overlapping diagnoses that create a labels lucky dip, with the pushiest and most clued up, not the neediest, knowing which label to push for to get them what they want or need, because the precise label attracts different support, even though the condition it is labelling is not as precise or understood as the label implies. My feeling is very strongly that you cannot understand any of the past or present autism labels without a proper accompanying description of the human being in front of you, and to want to reduce them to a label that everyone is supposed to understand immediately is the real problem here.

And in mainstream primary schools now, we are getting autistic children at widely varying levels of the spectrum, from non-verbal and incontinent tiptoe walkers to outwardly normal looking children who take up inordinate amounts of time behaving in ways that other children and parents still just view as obnoxious, naughty and the result of poor parenting. Nobody is being served well and society is not more accepting of these children with “superpowers,” even if when they grow up, they may have developed enough to masquerade as a person who is different and who is and never was disabled.

JustKeepBuilding In answer to your question

“Ca1mingC1arySag3 how is claiming to have a diagnosis one doesn’t yet have the ‘right thing for them’? What specifically prevents someone from saying they suspect they have autism/are autistic or are waiting for diagnosis?”

Because nobody should have to wait to understand themselves better or their difficulties accommodated. It was suggested to me that a diagnosis was likely and it would be helpful and it was helpful the minute the penny dropped ,not just at point of diagnosis. By then I already was well on the way to processing it all. I spoke to several people and did plenty of research. I have dc diagnosed. Would have been highly unlikely for me not to get a diagnosis. Like many I have been completely let down for many years and left to cope with autism completely in the dark which has impacted my whole life. No way was I going to park that for another length of time whilst waiting for an actual diagnosis. I have children to support and a life to get on with. My autism, my journey. I don’t think any should should be dictating how others travel on their journey particularly those ( mostly women)who by no fault of their own have been missed and struggled for years.

You get your needs accommodated on the basis of needs and not diagnosis though. Nothing wrong with saying for example, you need a quiet room to work in because you have problems with noise.