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ASPartOfMe
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19 Oct 2021, 7:39 am

Autism Parenting Magazine

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Professor Uta Frith of University College London recently spoke out about autism spectrum disorder (ASD) diagnosis, saying urgent changes are needed in how the condition is diagnosed as it “has been stretched to breaking point and has outgrown its purpose”.

The comments were made after a study was published in the Journal of Child Psychology and Psychiatry looking at time trends in autism diagnosis in the UK over 20 years. The study revealed that cases of autism diagnosis have risen by 787%.

Speaking as Emeritus Professor of Cognitive Development, at UCL Institute of Cognitive Neuroscience, Professor Frith commented: “This is an important study documenting the explosive jump in diagnoses of autism over the last two decades. If the purpose [of autism diagnosis] is to predict what an individual’s needs are, this is no longer possible.”
“Researchers need to think hard about how to disentangle the underlying conditions in individuals now all labelled autistic,” she continued. “Without such an effort, research into the causes of autism will become meaningless.”

Dr. Erica Skepnek, PsyD, a Licensed Clinical Psychologist working with Arizona Autism United (AZA United) believes autism diagnosis offers limited information: “Autism has a very heterogeneous presentation, so learning that someone has autism certainly does not tell us as much about them and their needs as it has in the past.”

Brianna Leonhard, BCBA, a Board Certified Behavior Analyst and educator, passionately added: “Any statement claiming a diagnosis is meaningless is a gross generalization, regardless of which diagnosis is being discussed. For autism specifically, the article points to the fact that awareness has increased dramatically in the last two decades and could be a leading cause in the rise of diagnoses. I would agree with that statement.”
Brianna is keen to remind people that autism is a spectrum, and says it is just recently that people are beginning to see the true range of that spectrum

Brian Steinberg, an ABA therapy provider, is a firm believer that the increase in diagnoses is due to an increase in the awareness of autism, along with a broadening of diagnostic criteria.

Sharon O’Connor, LCSW, who is diagnosed autistic and is a licensed psychotherapist, said: “There has been an increase in autism diagnosis because our concept and understanding of what autism actually is has expanded to better reflect the nuances of how autistic people can present.”
According to Sharon, our growing understanding of autism has been greatly informed by the increasing number of autistic people advocating and sharing about their experiences

Danielle Sullivan, MA, an autistic woman and neurodiversity life coach, continued: “As one of the many, many adult women who was not identified as autistic until later in life, it’s not surprising to me that autism rates are up. Diagnosis rates of girls, women, and people of color are lower than they should be considering that we know that autism is roughly equally common regardless of sex or race, which implies that girls and people of color are still being underdiganosed compared to white men.”

Danelle adds that, for practical purposes, diagnosis is very important as it’s often the only way to access services like therapy and life support through medical insurance, at least in the United States. The diagnosis is also necessary to receive disability accommodations in higher education and at work, and to qualify for disability benefits for those of us who are unable to work.

As we gain more knowledge around autism, it’s likely that we’ll be able to create more specific categories within the autism spectrum, similar to the way we have for ADHD, to enable researchers to develop more specific treatments and supports for autistics with different needs.”


I agree with most of what is being said here. I hope as we move forward Ms. Danelle’s prediction comes true. Specifically I hope the sub-categories are based on predominant traits such as “Touch sensitivity autism”

The 2013 DSM putting everything under one super category of ASD made this problem worse. True you had three severities sub categories based on need of services. A consensus is emerging as this type of subcategory to replace functioning labels. The problem is that is these sub categories is that severity is too general, it papers over being clueless in one skill and great in another, it also ignores the environment the autistic is surrounded by.

To oversimplify it was decided the DSM IV diagnostic criteria sucked, we have to change it, lets throw something together that sounds right. I hope for the DSM 6 we wait for the science before it is decided to get rid of Autism or create Autisms or whatever.


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Urselius
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19 Oct 2021, 8:49 am

I think that ASC/ASD is a useful umbrella diagnosis, as there are enough similarities between the traits and difficulties of people so-diagnosed. I must admit that I see that there are also significant differences between people on the spectrum, such as to make treating them in the same way impractical and counter-productive. However, I am not in favour of introducing lots of gradations of 'conditions within conditions'. I think this just makes things more fun for academics and clinicians, giving them more 'butterflies to collect', without helping the people affected. In an ideal world everyone diagnosed with autism should have their individual characteristics recognised and any treatments they require be designed specifically for them.


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carlos55
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19 Oct 2021, 11:41 am

Subdividing the spectrum via relevant bio markers is certainly the future and the best way to meet needs.

Neurodiversity should support this too since it will be the end of absurd comparisons between Elon Musk and the young person in a care home both having the same conditions.

Those on the super high functioning end can then truly defend their condition as a livable condition that doesn’t need curing


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Urselius
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19 Oct 2021, 12:25 pm

That would be hugely divisive. Individual need should be met by individualised therapy. Two non-verbal autistics could have very different abilities and needs, putting them in a diagnostic box together would not be appropriate. Sub-divisions, to be useful, would have to be so specific and overlapping, that an umbrella diagnosis and individual definition of characteristics and individualised treatment would be hardly distinguishable, and the sub-divisions would then be redundant.


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21 Oct 2021, 9:17 pm

It is only meaningless if the diagnosis does not serve the individuals in question.


But it is very true, that autism is so heterogeneous that an individual's issues are very different from one another.
That a glance on the label could mean too little or too many things.


If there would be categories, in what order would it be prioritized?
By circumstances of autism itself (genetics, sensitivity, etc.)?
By cognitive profiles (VIQ/PIQ/LD)? By emotionality? By sensory needs? By social drive???

It would had to be something that doesn't easily change with development and age.
It'll either also be ordered by a constant issue or an individual preference along side the usual autism traits.


Functioning levels and IQ based are a dud and everyone knows what happened to it.

Ordered by support levels is still not as effective...
Level 2 may mean a nonverbal 10 year old with ID and epilepsy, or a 30 year old with unmanageable mental health issues and personality disorders, or just a teenager with several learning disabilities and without ID.

It's like ordered by quantity of time of care and needs instead of something specific.


But for now...
We wait for science.


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Ettina
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25 Oct 2021, 2:58 pm

I'm autistic with no speech delay and an IQ of 137. I've met autistic people who were nonverbal and had IQ scores in the 20s.

In several cases, they showed very similar sensory processing, thought patterns, and general inclinations as me, just turned up to 11 with no ability to mask.

It really is one spectrum.



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25 Oct 2021, 3:03 pm

Ettina wrote:
I'm autistic with no speech delay and an IQ of 137. I've met autistic people who were nonverbal and had IQ scores in the 20s.

In several cases, they showed very similar sensory processing, thought patterns, and general inclinations as me, just turned up to 11 with no ability to mask.

It really is one spectrum.


I work with children with learning disabilities. Many are autistic.

I find that I have more in common with many of them, including the non verbal, than I have with the average neurotypical person.


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carlos55
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25 Oct 2021, 5:15 pm

Ettina wrote:
I'm autistic with no speech delay and an IQ of 137. I've met autistic people who were nonverbal and had IQ scores in the 20s.

In several cases, they showed very similar sensory processing, thought patterns, and general inclinations as me, just turned up to 11 with no ability to mask.

It really is one spectrum.


Quote:
It really is one spectrum.


There is little evidence of that different autistic people respond to different things.

Most likely autism is simply a symptom of multiple causes funneled down into a limited number of presentations.

There’s lots of reasons why someone can’t walk or see for example.


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Urselius
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28 Oct 2021, 12:48 pm

carlos55 wrote:

Most likely autism is simply a symptom of multiple causes funneled down into a limited number of presentations.

There’s lots of reasons why someone can’t walk or see for example.


True, but one blind person is likely to be able to relate more to the experience of life of another blind person, than that of a sighted person.


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