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

I think it depends how you consider autism it's really a specific cluster of traits which sometimes have different underlying causes. So as a clinician I have patients with genetic conditions and I'll read the diagnosis and know it's likely the. Hold is autistic, my own child has a physical medical history which makes me uncomfortable considering his diagnosis as autism because although he has a lot of traits I can't help but wonder if they come from the trauma his brain suffered, although his MRI suggests otherwise but then seizures can impact how the brain reacts to stimuli even if the MRI is normal.

I honestly think it might be more that autism ISNT a condition but a symptom

They’ll have to start measuring IQ if profound autism becomes a separate diagnostic category, won’t they?
I imagine that isn’t easy if someone also has serious communication and social differences which are an intrinsic part of autism.

Yes but this states the ground diagnosis is autism occurring WITH intellectual disability. High care needs and no useful communication essentially. So it's not just 'autism presenting differently' it's autism in individuals who also have this specific profile. Of course it gets sketchy, is the child incapable of communicating because of autism or cognitive difficulties.

If anything this is starting to let me see the side of 'all care simply needs to be patient specific needs focussed' and not about the diagnosis.

It is a complicated question.

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

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.

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'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.

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.

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.

Perhaps their child is asleep.

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.

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.

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.

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

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.

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?