To find the growing narrative of over diagnosis (autism, adhd and mental health) upsetting and draining

[Frazzlesforever]

There seems to be a drip drip of press headlines and change in the conversation that too many people are getting diagnosed. And that some parents are being too pushy to get extra help or trying to get be benefits etc.

As the parent of a high masking autistic girl I had to push for diagnosis although the school just saw a highly compliant, quiet anxious child. My daughter is now extremely mentally unwell through not coping in school, has had to drop out of school missing her gcses, emergency CAMHs involvement - devastating for her and us.

She is exactly the type of child who would fall under the radar. Just an anxious child with over anxious parents. Apparently seeming to cope until she just couldn't. Surely if anything we need better understanding and support for these types of children not less. Otherwise we also risk kicking the problem down the road To severe problems in adulthood. - poor mental health/outcomes etc.

I keep getting bloody tagged and to some extent called names, so yes i will defend myself.

I don't believe learning disability is due to autism. I think there are people are people who are severely impacted byautism but dont have ld. Ld is comorbid like any other.

No hrc isnt awarded soley on a sleep diary but it is difficult to evidence sleep needs in young children, for some a sleep diary is the only way of showing this do it is a large contributing factor.

Disagree all you want.

@Nmss right, so as I said, DLA isn’t awarded based on the parent’s word. You need professional evidence. HRC won’t be awarded based just on a sleep diary. So exaggerating in a diary won’t help because there won’t be professional evidence to support it.

I will.

People tagging you when responding to your posts isn’t dragging you into anything. You are free to ignore the tags &/or hide the threads if you don’t wish to participate in the thread. No-one is forcing you to post if you don’t want to.

Calling out ableism isn’t calling you names.

"That will be the same even if the diagnosis is split going forward. For example, even within what is being termed profound autism, some will be toilet trained, others won’t, some will be able to eat orally, others won’t, some will be able to communicate (not necessarily talking about verbal communication), some won’t, some will have sensory needs, some won’t. I could continue. So just saying the diagnosis won’t be enough to know how someone presents."

The current dx can and does include highly intelligent people such as drs. The profound autism descriptor includes people who don't have much usuable communication or are non verbal (non communicative, the slt def not the colloquialism), you directly ref what is beimg termed profound autism. Splitting the dx in the way suggested/ profound autism would maje that distinction. This is a massive improvement on the current status quo.

Totally disagree, autism can’t be categorised or put in boxes.

That doesn’t mention doctors or those who can hold a conversation.

Communication, especially when I said I wasn’t talking about verbal communication, isn’t the same as a conversation. They are two very different things. Communication comes in many forms for example, in some, it can be screaming or handbanging.

The person applying for dla would require evidence, the sleep diary is the evidence. It would be awarded if it shows that the child requires the level of support for hrc and the parent details it or rather it should be.

Me having a different view to you isn't ableism.

I will defend myself and my beliefs. I did try to leave this amicabley.

The lancet disagrees with you

Sometimes I think when people are arguing it’s because the topic under discussion hasn’t been precisely defined and so each party has a slightly different understanding of what’s being discussed.

Could that be the case here?

I don’t think anyone here believes premeditated violence is caused by autism, but that reactive violence or aggression can be caused by extreme distress in autistic individuals.
Triggers for this distress can vary but autistic people are often more sensitive to them than the neurotypical population.

Do you disagree @Nmss?

Yes, a sleep diary may be used as part of the evidence, but HRC won’t be awarded based solely on that evidence. Other evidence from professionals is also required.

As I said, I didn’t call you ableist just because you had different views.

I didn’t say you can’t ’defend yourself’. Merely pointing out that isn’t other people ‘dragging you back in’. It is a free choice you make.

You were talking about the profound dx not giving me the detail i wanted. I replied by comparing how the profound dx is an improvement to the current dx?

https://childmind.org/article/what-is-profound-autism/

Why are you focusing on the term profound autism. Thete is disagreement on IQ ie below 70 or below 50. Some say non verbsl, others say low verbsl. But interestingly the definitions of profound autism all include behaviours ie self injury or challenging behaviour... kind of contradicts what you are saying.

Interestingly my child needs 24 hr adult care and likely will do as an adult, actually 2 to 1 care. Ditto supoort with self care toileting, safety etc but can talk.. though regresses to growling. Also has complex motor and verbsl tics though..

Diving people up by category and with different types of autism labels is not particularly helpful as many many autistic people have other comorbid conditions and complex profiles. My sons sensory processing issues are as medically diagnosed 'profound and complex'. Not sure that label helps other than battling the LA for OT support..

Having subsets like this is simply being used by government, local authorities, services, education, even medical professionals as a way of LIMITING support given.

Not i abolutely agree with that.

Ffs

I know what you posted. I was pointing out profound autism still wouldn’t enable someone to know how someone presents. There are still a wide variety of differences between individuals who would meet what is being termed by some as profound autism. That doesn’t have anything to do with doctors with autism or those who can have a conversation.

You may have noticed but i'm in another argument at the mo.

The term profound autism was coined by the lancet. If you look that the article answers most of your questions and why a seperate dx is required.

Well then, I think most people on this thread actually are in agreement on the violence issue?😁

Yes but they wouldnt be expecting a person of average or higher intelligence able to hold a conversation where their autism is "hidden". They will be expecting the other side of the coin. They would be expecting someone with old school severe autism.

Have you thought about a role with the UN Peacekeeping Team?

@Okaylie thank you for your diplomacy

@Nmss you saud this

"I don't believe learning disability is due to autism. I think there are people are people who are severely impacted byautism but dont have ld. Ld is comorbid like any other." Yet the definition of profound autism you want seems to include a LD, IQ below 50 or 70... so again contradicting yourself? That is what the lancet is taking about as profound autism.

Its bizarre because I know and support lots of non verbal autistic children and young adults, they do need 24 hour support but not all would have an IQ that fits that. And non verbal doesnt mean cant communicate.

Plus the idea this would be obvious by age 8? I have worked with autistic children who at 8 were non verbal but went on to develop some speech or who went on to use other communication methods.

The lancet criteria opens up a whole heap of issues.

I am not sure what issues you feel will be solved by a seperate diagnosis jist because you dont feel autistic correctly describes your child. I dont think autistic alone correctly describes mine.. it doesnt he has a tonne of other things and the interplay makes him complex. As is the case for msny of the pupils I work with.

I was just going to add similar to my post given the news.

That wasn’t my point, though.

Yes. I don’t think anyone has mention premeditated violence as part of that element of the discussion.

Reactive violence caused by extreme distress in autistic individuals can still be violence that is a direct result of their autism.

The example I gave about DS3 was reactive violence caused by extreme distress, which in turn was a direct result of his inability to cope with change, which is a direct part of his autism (as per his reports) rather than something else.

I can believe that there are people who don't have ld but are severely impacted at the same time as there being people who fit the profound dx. These aren't mutually exclusive.

Profound autism is a start, i hope in the future there will be more definitions but yes my priority is that of my ds and I hope profound autism is included in the next dsm etc