"Losing" Autism diagnoses/"Recovering" from autism

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It just isn't this black and white. Psychology doesn't work that way. Autism is vague, it's not the result of concrete science. People have their beliefs and biases, but no one is necessarily right or wrong. It comes down to opinion.

Someone diagnoses as autistic at one point in time, but not later on. Did they improve (is it still there), or did it go away? Why or why not? How can you know? What are all the relevant variables and factors here? Did they really have it in the first place? Why or why not? How can you know? What's the underlying logic behind the belief? Etc.

How much is semantics? How much is language? Does "recovered" mean "learned coping skills"? Does "recovered" mean "cured"? Does "autistic" inherently mean "can't recover"? To some people it might, to others it might not. Etc.

The issues of behavioral based diagnosis.


No biomarkers, no concrete ideas, no nothing.

Many conditions and states can mimic autism and be mistaken as autism.

Not neurology or innate -- but trauma, actual treatable diseases, some imbalances fixable by lifestyle changes, certain or coincided developmental trajectories and memory issues (likely induced with deprivation) that 'seem' autism, or forbid 'personality disorders'.
Heck, inflammatory and/or anxiety based conditions, mistaken for autism.

Not that any of these are mutually exclusive from autism.


At the same time there may actually be a real autism just as consistent somewhere, just each expressed it differently and some ends up with different labels because of their behavioral traits.

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Lose more time here - Updates at least once a week.

I think they should start doing genetic mutations, deficiencies to environmental or Schizophrenia test for Autism, such as doing psychical sensory tests, mask illusion and even other communication test than just looking for behaviors it self

Even if symptoms of Autism is now gone, I would still consider them developmentally delayed, because they had traits of ASD for more than four or six months and they had it for so many years, even if they lost their diagnosis

I have to point out the other side of the coin here: many advocates seem to act like receiving ASD diagnoses are always empowering and uplifting experiences.

Sometimes I wonder if this has anything to do with age at diagnosis. Not all Autism Activists and advocates were diagnosed as adults, but many seemed to be. For them, they experienced uncertainty and anxiety during their youth and the diagnosis gave them a community and something to hold on to. Maybe they imagined that being diagnosed at a younger age would mean that the empowerment that they experienced as adults upon being diagnosed would have benefited them as children and adolescents.

I don't think we should see growing up with an ASD diagnosis through completely rose tinted lenses, though.

I was diagnosed with Asperger's syndrome at age ten. I was put in special ed classes that designated me as different and impaired straight off the bat, and didn't actually help me organize my work or succeed academically. I was criticized for making mistakes that all students made and praised for doing the bare minimum of what other students did. I internalized the idea that nothing was expected of me. I was told that I wouldn't be able to go to a mainstream school, would never be able to attend college by myself successfully, and would never succeed in life without serious coddling from disability services.

I've been accused in my adult life of distancing myself from the term "disabled", but you know what? It's almost never been empowering for me. It has almost always been degrading. I still struggle, but I always have to weigh the pros and cons of seeing myself through the ASD diagnosis or asking for help from disability services, because seeing myself through that label in the past was not always beneficial to me or my self-esteem. I very much relate to the idea of wanting to "recover" from Autism. At the very least, I think it would be good to see "ASD" behaviors as plastic and changeable, and not completely define ourselves by that label.

It's important that we change the way that "disabled" children and adolescents are treated, and I am all for disability activism. But we should also remember that "recovery" from severe symptoms isn't always a bad thing or something that should be scoffed at, and that some people do not have a positive relationship with the label.

John Elder Robison had a good article that spoke to the diversity of needs and desires amongst those with an AS diagnosis, and did mention that many young people (like me) who grew up with the label have ambivalent relationships to it, and don't necessarily view their experience being labeled "Autistic" as empowering or positive.

[url]
https://www.psychologytoday.com/us/blog ... odiversity[/url]

Young age at diagnosis really can play a factor. I think we need to focus reform efforts on the special ed system itself. What kids with specific problems aren't being reached? What are the costs and benefits of the label? How do we make assistance available without stigmatizing kids for being "special needs" or insinuating to children not to expect anything of themselves?

A lot of people in the system seemed to have good intentions, but did not have the perspective or resources to do much good. Many of them got caught up in a game of seeing us through the most condescending lens possible.

Many kids diagnosed today are below boarderline ASD.

They fall just below the threshold but are labelled ASD anyway so they get the extra help, that may explain things too.

Autism in kids is a CARS score, 30 & above is autism, 37 & above is severe autism.

For me a 27 year delay in getting a dx and competent psychiatric help and support(been receiving MH treatment since late 1973), has meant any hope of fulfilling any potential I might have had has been totally destroyed.

It's now more about maintaining what for many of the high flying types here would be a substandard level of functioning. That functioning, for the last 3 years, being better than it used to be due to good support from my stepdaughter.

My 2 cents:

I think the use of the term "recovery" is problematic.
It infers the idea of someone having a disorder and then recovering so that they no longer have that disorder.
This is contrary to the prevailing scientific consensus that the basis of autism is a developmental difference in brain neurology, which will still be present throughout one's life.

The issue is that autism is diagnosed not through actual testing of brain neurology but through observation of behavioural traits.
I agree that it may be possible for someone diagnosed with autism in childhood to later lose that diagnosis, through learning to suppress, work around, or compensate for autistic traits so that their behaviour no longer satisfies the criteria.
But to call this "recovery" is misleading and problematic - as it leads to inference of autism being curable.

I have no problem with the alternative terminology "optimal outcome".
By all means, place your child in therapies aiming to achieve an optimal outcome, surely we can all agree on that.
Just don't expect those therapies to cure their autism.

The diagnostic criteria are intrinsically rather fuzzy and arbitrary, to begin with. So, it should be no surprise that there are people who sometimes fall on one side of the line, and sometimes the other, depending on any number of factors, including what mood they happened to be in on the day they were tested.

I made my own new diagnostic criteria called Oren Franz Syndrome.

What is Oren Franz Syndrome?

Oren Franz Syndrome is a form of Autism were all symptoms of ASD remits late in life with support and therapy and where cases of people lose their ASD diagnosis when they are considered to be completely improved over time after reviving therapy.


Symptoms of Oren Franz Syndrome includes history of:

* Communication delays
* Restricted Interests
* Repetitive behaviors
* May include sensory issues as well

But all of these symptoms remits late in life with support and therapy.


When some people lose Autism diagnosis, they should be re-diagnosed with my new diagnostic criteria.

I would make the same point as Edna3362 - the diagnosis of autism is predicated on behavioural traits, many of which have changed over time and will doubtless do so again. How autism is diagnosed and conceptualised is influenced by the history of the study - whether current conceptualisations accept and develop those early conceptualisations or reject them, they equally bear the influence of history. All of this is, of course, mediated by the societies in which autism is located and the research priorities that arise out of those societies, in turn affecting our knowledge of what autism is and thence influencing the nature of diagnostic instruments that are created.

The whole narrative around 'autism recovery' smells far too much like the 'curing autism' narrative to me, which I, and undoubtedly a great deal of people here (without generalising) also find horrifically offensive.

Me too!

I agree!