Should those with severe autism have their own diagnosis. Thread 2

[Cubic]

The first thread was full of debate of this emotive topic. Most posters engaged in good faith. Many of us want to have this discussion and that includes posters for and against.

It's worth saying that some posters may have autism so please bare that in mind as some posts could be mis interpretated or written in a way where it appears abrupt and that isn't the intention.

There was a notable derailment in the last thread and it is suggested that if/when this happens it is ignored.

The poll at writing was 91% in favor of a seperate diagnosis after over 1000 votes.

https://www.mumsnet.com/talk/am_i_being_unreasonable/5516148-those-with-severe-autism-need-their-own-diagnosis?page=10&reply=151706546

Link to previous thread

Yes definitely but I think the whole Autism spectrum becoming so wide has caused issues in itself.

I agree that the spectrum is too broad. There is a large difference between those that are severely autistic, non verbal and unable to look after themselves to those that are high functioning. They should not be treated the same.

Say this was to happen and a new name for the diagnosis was given to those with very high care needs. What would actually be different?
All this talk about language and names and labels and diagnosis doesn’t ever achieve anything. Changing a name for a select group of people isn’t going to magic extra support or funding out of thin air is it? And what would the cut off be to be given this special name? It would only be a matter of time before someone complained that too many people were given it. And the cycle continues.

Yes I think it should. For 2 reasons. I think the level of support required by those with around autism is very different to the level of support my son who has higher functioning autism requires. He's verbal, academically capable when well supported etc. however in neurotypical spaces he definitely stands out as different. He couldn't cope with a very minor issue today and ended up whimpering under a table in a venue over it. He's not a toddler, he's too big to easily haul out from under a table. Yet he couldn't, genuinely couldn't, get himself under control to get himself out.

I feel like neither are served by having a single diagnosis, I feel like a fraud if I state my son is autistic because I feel I need to be clear he can talk. Communicate, access mainstream school etc. because it feels fraudulent that someone may think I'm the position of a friend with a non verbal 5 yr old who cannot follow 2 step instructions and will likely never gain independence. I'm tired, she's exhausted, I'm often running on 1 frayed nerve her last never has snapped entirely. I CAN send my son to a small number of childcare options that can support his needs, she has no childcare options out with respite services and an sen school.

That said I also have a neurotypical child, she's 4, parenting her is an actual wall in the park, she has wee issues here and there but largely she sleeps, eats, can manage her emotions age appropriately, if something causes an upset she can be brought back to baseline fairly predictably, she hasn't been hospitalised regularly for seizures, she can be left to do a craft activity while I got to the loo and not try abscond the house as my son would have done at 4. Even when upset she's very unlikely to run into the road. She tells me she's hungry, doesn't wait until she's angry and upset l, so many reasons that parenting a neurotypical child is as different from parenting my son as parenting my friends profoundly autistic child is from parenting my lower support needs son.

It would immediately convey the situation my friend is in 'mu son is profoundly autistic' there everyone knows the extra struggles and the level of care and barriers that causes. It also means me saying I have an autistic child who attends mainstream school conveyancing a different picture.

I don’t think that would make much difference to that person though. What does using a different word to describe a situation actually do to improve the support or care offered/available? Because isn’t that why this topic gets brought up? Because people want more support and funding for their kids? I just don’t really see how this initiative would achieve that.

Also, those arguing for subtype diagnoses, the public don’t even understand what autism is when it’s just called autism. How on earth do you think that will improve with multiple subtypes? How will someone know what autism type 1 or 2 means for example?

Most people will understand very well. They knew what Asperger's was. And many know what they're seeing when someone non verbal is stimming.
Not enough, I'll grant you but people are much more aware than they were in the past.

Also it is measured in reference to care and support required.

I personally couldn’t give a stuff what the general public think or understand, I would be hopeful it would do something to make services more accessible.

A couple of examples;

We were referred to a specialist dental service. We’ve attended a couple of times now and it’s in no way appropriate for our child’s level of need. Yes, they’ve got some cause and effect toys and low lighting. But there’s still the expectation that he sits in the dentists chair before she looks in his mouth. She still doesn’t come to greet him in the waiting room - as in, meet him where he is.

We’re currently in an ongoing medical investigation that is proving really difficult for him to access. His doctor requires bloods, and recommended we “just” take him to the blood clinic to get them done, and there’s some cream we can use for numbing that works for
”other autistic” children.

I’d like it if his level of need being properly acknowledged and catered for wasn’t so dependent on what works for some blanket definition of autism, because his disability and inability to access makes that impossible for us.

I think too much is catered for what some services see as generic autism, though I’m not sure what generic would even look like in reality.

Children like mine are too far to the extreme to have their needs met by that. He’s “too autistic” for autism services.

I think you’re being a bit generous in thinking that people working in organisations would understand a change in terminology/diagnostic labels and what that actually means in practice. Any change would take literal years to start trickling into where it needed to be to make improvements and even then it would be imbalanced and a bit of a postcode lottery. Entirely dependent on the organisation and its proactiveness in implementation.

I don’t think it’s the label that causes the issue. It is the lack of understanding around varying needs, and the importance of person centred care and making appropriate reasonable adjustments. A name change isn’t suddenly going to make that better.

Yep! I work in a clinical setting where 90% of lower support needs kids who are similar to my son I can manage in a non traumatic way to carry out my clinical tests.

Then there are the children who would fit a profoundly autistic label and these are the children who when something needs to happen for their best interests the only option is that they are held safely and it's kept as non traumatic as possible with sensory lighting. Quiet room, carrying out tests quickly and making sure they aren't kept waiting and can have support items. These are children who can't understand the need for a procedure they find unpleasant.

As a professional as well as a parent a straight up acknowledgement of the level of need lets us plan accordingly so the child has the support they need and frankly so the parent does too.

Perhaps their child is asleep.

Possibly.

Our biggest issues are with places we expect to do better in terms of meeting need - doctors, hospitals, dentists, autism/disability charities that exclusively host events that by nature exclude children with high care need.

It might be a naive hope, but my hope is that those places who already should do better, would be encouraged to by some real definition rather than a one word descriptor that doesn’t actually describe a level of need.

I understand what you mean. This is a very familiar problem for my family. My child is verbal and just about managing academically so although her issues are still massively challenging she would never be considered "profound" but what you are describing would be totally inaccessible for her as well and I can also imagine that it would be pretty inaccessible for children with a range of issues including things like major anxiety even in the absence of autism. I'm honestly not sure how a bit of low lighting and some toys would solve the issues for anyone but a very narrow group of individuals. I suspect this lack of real accessibility is true across may disabilities and in many settings.

“I'm honestly not sure how a bit of low lighting and some toys would solve the issues for anyone but a very narrow group of individuals. I suspect this lack of real accessibility is true across may disabilities and in many settings.”

I agree. DS doesn’t have an intellectual disability, does have speech (mostly) but can’t access the autism-friendly initiatives either. Anxiety and MH issues make it too difficult.

This was not unexpected and a lot of people were aware this will happen when diagnostic criteria widen so much- more diagnoses mean reduced resources. I agree there needs to be a better qualifier to identify different sets of needs. I find it however slightly offensive and almost ableist - why it is that only those with multiple or profound disabilities should need another label to get right support? Many were already diagnosed, with disability being more noticeable and having significant impact on tgem as well as their families and carers. Perhaps we should be allowed to say 'mild autism'.

I've reported this thread as it says nothing your last one doesn't except for some added digs toward people who don't agree with you.

There's plenty of space left in the last one, you just haven't got the responses you wanted.

Profound autism is what is being suggested with a distinct criteria.
https://pubmed.ncbi.nlm.nih.gov/38423722/

You don't have to take part. Your post is goady. I don't know hoe long the other thread will take to fill while i'm not reading it.

Nobody is forcing to join in and there is a hide function if you require it.

This is interesting because people keep saying profound autism doesn't exist as it is s autism WITH other intellectual disabilities alongside.

Profound autism, if you read the definition, is being suggested as a diagnosis including intellectual disability as part of it. So it's literally autism with intellectual disability, it's just the specific term that differs

Profound autism is the only one with traction and a possibility of being defined in the diagnosis. I'm not against other diagnosis or other groups being formed. I think it would be helpful. My son would sit in this group so I am personally interested in this

That thread had some great discussion until it was derailed yesterday by a poster.

Why can't we have this discussion? There is no digs on this thread. If it upsets you please hide it but we should be able to debate this subject.

There is a bit more to it with communication and care needs but yes IQ is part of it.

At the moment, at least locally to me IQ or any cognitive profiling isn't done as standard. Our son's was because we paid for an inde report for tribunal even then we had to ask the paed to formally diagnose LD. LD isn't generally diagnosed if someone is autistic and their presentation soley put down to autism. We had it done to secure certain adult service access when he leaves education. Partly for hospital if he needs to go in and social care.

I think that some mental health and ld are dufficult needs are difficult to seperate from autism. Is one the cause of the other, does one make the other worse and where do they stop and start? So I can see why they may not be diagnosed seperately but I think it's helpful especially now there is such a difference in how people present who have autism.