Optimal Outcomes for Autism

24 Jan

A recent study discussed people who were given autism diagnoses but later did not qualify for the diagnosis.  The study is Optimal outcome in individuals with a history of autism (full text online) and Emily Willingham has a discussion of it as Can People Really Grow Out of Autism? Since she’s discussed the study, I’ll focus on “optimal outcome”. At least my take on it.

The authors of the study refer to Optimal Outcome as

we require that the individual be without any significant autism symptoms and function within the normal intellectual range; however, other difficulties, such as weaknesses in executive functioning or vulnerability to anxiety and depression may still exist.

Other authors have considered individuals who “lose” autism diagnoses but remain intellectually disabled.

There is an additional group of children who lose the diagnosis, but still have significant intellectual or language disability (see for example Turner & Stone, 2007, and Sutera et al., 2007) and this is certainly another kind of good outcome for these children.

I have a different definition of “optimal outcome”. Happiness. Most parents want to see their kids happy. I don’t know why I should change my definition just because I have an autistic kid. And, yes, one can be autistic and happy. And, no, being non autistic is not the same thing as being happy.

It’s not a good definition for research. My guess is that there are reasonable “happiness” measures researchers can use, but it will likely be more difficult to reliably quantify than “not autistic”. But for this discussion I’m not a researcher.

I’ll take happy and autistic over non-autistic and unhappy as an optimal outcome for my kid any day.

Which is a good place to segue into the cure debate. I don’t spend a lot of time on the cure discussion. Partly this is because like optimal outcome, different people have different definitions of “cure”. Is a cessation of self injurious behaviors a cure of autism? Is the ability to mask one’s autism behaviors for long periods of time a “cure”? Is a complete change in the way in which one thinks a cure? The answer is yes–each of these is a definition some people chose. And there are more.

Where the cure discussion goes really wrong, in my opinion, is when people assert that “not autistic” is better than “autistic”. Often to the point of basically trashing autistics in the process by using terms like “train wrecks”, “tsunamis”, “burdens” or worse (yes, it gets worse). A lot of harmful language is used in promoting the idea of a cure.

When told that I am against an autism cure (strangely, I am rarely asked my opinion, I am told it) I sometimes respond, “which cure is that, exactly?” Makes people pause. If the conversation continues, I ask, “tell me the exact steps I need to take which you can guarantee will cure my child of autism”. The cure debate is a hypothetical topic. One which I wish more people would really engage in, but hypothetical. I wish people would engage in it to get to the point of at least accepting as valid the idea of “let’s make a world where if a person is offered a cure, she will be equally accepted either way, and will be offered the support she needs either way.” I guess that’s my idea for an “optimal outcome” for society.


By Matt Carey

Advertisements

13 Responses to “Optimal Outcomes for Autism”

  1. Benison O'Reilly (@BenisonAnne) January 24, 2013 at 08:29 #

    Couldn’t agree more. My 11 year old remains firmly on the spectrum, but, boy, is he happy. Life for most part is a blast according to my Joe. Only hope he remains that way.

  2. Elaine January 24, 2013 at 14:15 #

    We need YOUR help! Donate now to Helping Hearts for Autism, and give to families in need who are affected by autism.
    By making a donation to Helping Hearts for Autism, you can make an incredible difference in the lives of families like these. With the money collected, Special Learning will give away as many $500 grants to families as donations will allow along with an in-kind match of $500 in Special Learning products to these recipients. Families will be chosen by an unbiased selection committee on a quarterly basis. The need for donations for families like these is SO great, but if enough of us come together, we can certainly make a difference.

    Please visit http://www.special-learning.com/helpinghearts_donations to know more on how you can help.

  3. Lara Lohne January 24, 2013 at 17:48 #

    ASAN has released a statement regarding this exact topic and the study relating to it. It can be found here: http://autisticadvocacy.org/2013/01/asan-statement-on-fein-study-on-autism-and-recovery/

    I had to share this when Karla Fisher shared it on Facebook, because it is so important that people understand ‘faking it’ or ‘passing for normal’ is not an optimal outcome for the individual because it creates a lot more problems then it solves.

    My comment included when I shared it on my Facebook page, “”Passing for normal” isn’t neurotypical. With repeat practice anyone can become proficient in a skill. But autistic people who master the skill of social interaction don’t necessarily lose the need to stim, sensory processing disorder, or the restrictive and repetitive behaviors, which are all included as part of the diagnostic criteria for an ASD. Of course ASAN covers all of that in this article. Please read it and share it because our goal should not be to create autistic people who appear ‘normal’ but suffer from anxiety, depression and become suicidal because they are constantly stressed and exhausted pretending to be something they are not, our goal should be to allow them to be who they are and accommodate them accordingly.”

    • Sullivan (Matt Carey) January 24, 2013 at 18:16 #

      “With repeat practice anyone can become proficient in a skill.”

      Can we say most people?

      But, we do run into the issue of a behaviorally based diagnosis. At some level “passing for non-autistic” will end up reducing one’s probability of being diagnosed.

    • RA Jensen January 28, 2013 at 09:35 #

      What a bunch of BS coming from ASAN. My daughter was diagnosed with PDD/NOS in 1988, lost her diagnosis, and has had a normal outcome. She is not ‘hiding’ or ‘passing’ for normal’. She is as normal as any woman in her 20’s living in Manhatten with no more and no fewer problems than any other young woman her age. ASAN and the self diagnosed ASPIES are the ones who are ‘passing’ for autistic to ‘hide’ their own inability to relate to other people. Thankfully, DSM-V has recognized that there is no such thing as ‘Asperger Syndrome’ and these self-diagnosed ASPIES will be move out of the Autism Spectrum Disorder category and into an entirely different category, Social-Communication Disorder.

      • Sullivan (Matt Carey) January 28, 2013 at 22:04 #

        The data so far doesn’t state that those with Asperger syndrome will all be reclassified as having SCD. Who says that ASAN members are “self diagnosed ASPIES”? That’s a nice bit of stereotyping. How, exactly, does one change a self-diagnosis anyway?

      • smc February 12, 2013 at 18:20 #

        DSM-V will just put language delays and social skills issues under one criteria — communication problems which refer to reciprocity issues in communication. This would mean that whether you talk a lot or barely talk, if you are having issues with communicating in a natural back and forth way you fall into this diagnosis — both Aspies and all ASD people have this problem. Then there is the other criteria which is restrictive and repetitive behaviors which both Aspies and all ASD have in common. It’s not that Aspies won’t exist — they will fall under ASD. Previously they did not fall under the diagnosis because there were three criteria, social skills problems — check, RRB — check, language delays — Aspies were often early talkers so many would not qualify. The problem with this is that they didn’t get the services — the speech services that taught pragmatic and reciprocal language at an early age to non-talkers would have benefitted Aspies as well.

      • psychtld March 18, 2013 at 14:39 #

        People who know me well would know EXACTLY the comment I would want to leave for you.

    • psychtld March 18, 2013 at 14:36 #

      “I had to share this when Karla Fisher shared it on Facebook, because it is so important that people understand ‘faking it’ or ‘passing for normal’ is not an optimal outcome for the individual because it creates a lot more problems then it solves.”

      Well said!

  4. lilady January 28, 2013 at 22:31 #

    Spammer alert.

    • Sullivan (Matt Carey) January 28, 2013 at 22:59 #

      Thanks! I deleted the comment.

Trackbacks/Pingbacks

  1. Optimal Outcomes for Autism - January 24, 2013

    […] Read more at Left Brain Right Brain. […]

  2. Where Innocence Began By: Kenna Mary McKinnon - January 31, 2013

    […] Optimal Outcomes for Autism […]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s

%d bloggers like this: