Kids With Severe Autism Often Overlooked In Research

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Children who are on the severe end of the autism spectrum are increasingly being left out of studies on treating the developmental disorder, new research suggests.

A review of 367 studies on children with autism conducted between 1991 and 2013 finds that the proportion of research that included those with severe autism “decreased significantly.”

“We found a marked decline in the inclusion of people severely affected by autism in clinical research, even using a very liberal definition of severity,” said Matthew Siegel of Tufts University School of Medicine and Maine Behavioral Healthcare. Siegel is a senior author of the literature review, which was published recently in the Journal of Autism and Developmental Disorders and is believed to be the first to assess whether research is overlooking those with severe autism.


https://www.disabilityscoop.com/2019/03 ... ked/26209/

That's alarming.

The article did not say why this is so. Speculations follow...

As autism severity increases, so too does the difficulty in making the child available for research … ?
As autism severity increases, so too does the difficulty in getting the child to cooperate with the researchers … ?
As autism severity increases, so too does the difficulty in obtaining an accurate diagnosis of autism … ?
As autism severity increases, so too does the occurrence of more serious or significant comorbids … ?
Some combination of the above?
All of the above?
None of the above?

You offer some good possibilities as to why.

Children with less severe autism are easier to work with?

Ah, but they are only guesses.

It's really annoying to me when a study brings to light a situation and provides no clues as to its cause or resolution.

Well they're better guesses than a lot of people would make. I agree it's frustrating that they offer nothing re causes and resolution.

Has the amount of money spent on researching severely autistic kids declined or has the money expended stayed similar (taking into account inflation) but research into less severe forms of autism gone up radically causing the proportion expended of severely autistic kids to decline?

At least it's not "Space Aliens".

That's also a good question. Recent cut-backs in government funding for medical research may be a clue...

After the high functioning started coming out and being all loud about it, they also started to shut down any moms out there or anything out there that dared to mention severe autism and how badly it affects families. Even Autism Speaks used to do those videos and the high functioning ones ranted about it and protested about it and flood their pages about their propaganda and trying to shut down anyone out there with kids with severe autism. It has worked and they have succeeded, now we don't hear about severe autism anymore. Why isn't it surprising they are overlooked now?

Activists feel threatened by reality and truth and will try and shut down anything they don't like hearing and will try and control what they want people to see and be right about it and not hear different perspectives and just pretend none of it is true. Have a severely autistic child who won't stop screaming all day and doing self harm behavior and beating people up and can't be left alone and keeps trying to get outside and the fact both of you can't work full time jobs, shut the f**k up and just pretend none of that is happening in your family. Let everyone just think autism is all about thinking difference and perceiving the world different and learning different. Have it out to be a quirk, a gift, that they will grow up to have normal lives, that they can be normal people if given the right support.

If you really want to grind your teeth over something stupid, then just google "Indigo Child".

GRRRRRRR...

A number of factors may have contributed to this decreased inclusion of severely affected participants in treatment studies. Most notably, the rapid growth in identification of the higher functioning or less severely affected portion of the autism spectrum has caused the proportion of severely affected individuals in the total ASD population to decrease markedly (Matson and Kozlowski 2011). These changes are associated with changes to the ASD diagnostic criteria in DSM IV (American Psychiatric Association 1991), DSM-IV-TR (American Psychiatric Association 2000) and DSM-5 (American Psychiatric Association 2013). Additionally, it is possible that the large increase in the higher functioning portion of the autism spectrum has expanded the range and number of modalities appropriate for intervention research, such as cognitive behavioral therapy for anxiety or anger management in ASD, which subsequently would increase the number of intervention studies that do not include the severely affected. Finally, it may be that as funding for research in autism has increased, and as more investigators are drawn to the field, they may be less apt to be familiar, have access to, or be comfortable with investigating more severely affected individuals.
https://link.springer.com/article/10.10 ... 018-3844-y

Whoa! Good catch, BTDT!

lol. Don't forget the update, Two grown indigo's reproduce to create a 'crystal child', our ultimate spiritual guides here to save us all. Think one of them made an appearance on American Idol and gave a very embarrassing speech.

What is more common, the higher functioning autism or severe autism?
Maybe it has something to do with clumping all forms of autism into one category that no longer distinguishes different types of autism? Not sure exactly why they did that, it seems that distinguishing between different kinds of autism would be important, now it's just one diagnosis, Autism Spectrum Disorder.

Back in high school, I knew something like this would happen, the severe autism would phase out and be unheard of and autism will just become like a learning difference, having social interaction issues and fitting in and being weird and quirky. I saw back in high school of autistic people being against a cure, I remember groups like CAN (Cure Autism Now) and I was in autism yahoo groups where I saw them protesting against it and complaining about it and lot of NT bashing. It was pretty bad on this forum too ten years back and now it's toned down and I don't see that fight anymore against severe autism.

I don't really blame autism parents hating Asperger's and HFA and not seeing it as real autism if they are going to be getting harassed by these people on the spectrum and getting trolled in their blogs by them or on their youtube channel.

I would guess it's mostly because It Is hard to deal with people with severe autism, they are hardly cooperative, and may even hurt somebody if they have a crisis.