Redefining autism and how it might affect your child.

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I think Mr. Robison is overlooking the fact that many adults, and particularly women with AS, already fly under the radar because they have learned some degree of masking skills and are not the socially apparent catastrophe they were when they were younger that the "professionals" are expecting.

To his statement:


Apparently Mr. Robison has not checked out the cost of an ASD evaluation lately, which can range from a few hundred, to $4,400. He overlooks the fact that diagnostic services for adults are scarce, and the fact that most adults who seek a diagnosis are financially compromised as a result of their difficulties. And then there's the issue of perpetuation of question. The phenomena where an individual's diagnosis, and struggle is thrown into doubt or made invalid every time the standards of diagnosis change.

From the age of 2 onward I have been diagnosed with more or less the same thing, no less than 4 times, and now I am to seek re-diagnosis a 5th time? When does this end?

I am hard pressed to believe this re-definition of AS in the DSM-V is simply a marketing ploy as they need a way to continue their product line. And worse, they are not taking a scientific approach to it at all.

Chronos, the adults who "fly under the radar" as you say, are mostly independent in my experience. Those who depend on supports from a service agency should still qualify for the new diagnosis because of that support dependence. As to cost . . . If a person is on some kind of disability support, that support should cover the cost of evaluation if that is necessary.

One of the points I made in my article is that we need to be strident in our demand for supports and maintenance of those supports through the diagnostic changes. I strongly believe the cost of re-testing should be borne by insurers and service agencies, not the affected individuals.

Remember that a large percentage of the adult AS population is either living independently, or fully supported on disability. It's the people in the middle - those on partial supports - who are at risk here.

Respectfully I have to agree with Chronos on this one. I appear independent to the outside world, but what the outside world sees is not the whole picture.

I'm certainly not telling any of you that you do or don't need services. In my article, I argue that retesting should be the responsibility of the service agencies. I hope we can all make our opinions known and keep this issue visible

Thank you for weighing in, <I'm not sure what to call you, truncating your screen name seems weird when I know who you are but haven't met you...Mr. Robison?> I greatly appreciate your response.

I agree that the biggest issue is services and how they are administered. They can call the deficits flying green angel poop and number the degrees of severity from 1 to 1000 or say they go up to 11 for all I care: if my son doesn't get social skills classes or pragmatic speech, I don't know what will happen to us. We are already struggling to get his teacher - under an IEP, so she knows his diagnosis - to believe us when we say he might respond but still might not understand what she expects of him.

I am of the private belief that there are many, many, many people who would benefit enough from social skills and pragmatic speech classes that it might be more cost-effective to make them part of the general education curriculum. Then we wouldn't have to worry about "qualifying" for anything, at least as children. Other deficits may be just as widespread, but those two stand out in about a third of my son's classmates, and I remember them from about a third of my own classmates, back when this diagnosis was a twinkle in the eye of the DSM-III.

In the US, if there were an individual who received government services based on a particular diagnosis, and the criteria for that which they are diagnosed with was redefined such that they did not meet the criteria, they would simply eventually lose those services.

I don't know that there are many adult individuals who receive government services due to AS because (contrary to what certain political factions would like to think) they are nearly impossible to get unless one has a good lawyer and a lot of self advocacy know how (which most individuals with AS don't have), or happened to procure a diagnosis of their condition during childhood (which most adults with AS did not due to ignorance of the condition and the sluggishness of the field to move beyond a focus on young children).

However I believe there are numerous individuals who do have AS and who are chronically underemployed or who have difficulty maintaining employment because of certain struggles that AS poses in the context of the NT world. These individuals look "normal" but are not. They can't maintain jobs or form or maintain relationships even though they might make eye contact and might be able to hold conversations. They would meet the criteria for AS in the DSM-IV if it is applied in the context of the individual when they were a child, but they would not meet the new criteria for ASD.

For these adults, a diagnosis, at the very least gives them a token of understanding of themselves and a mechanism by which employers can understand and accommodate their condition. Even as things are now, however, they have difficulty obtaining this due to the scarcity of those who deal with and are knowledgeable on how AS can manifest in adults, and the costs.

The redefinition will push these individuals completely out of the realm of services or employment protection because it will make them completely invisible. They will walk into an office for help and be turned out into the world again with nothing even though they really are different and might struggle significantly despite their appearances.

And what is the scientific basis that AS and HFA are one and the same? There is the issues of normal language development, even high verbal IQs, vs. clinically delayed language development. That's a rather curious thing.

Though the DSM-IV criteria is only based on the observations of Hans Asperger and not a mirror reflection of them, I believe Hans Asperger did observe a set of individuals distinct from others on the spectrum. These individuals had characteristics which were similar or identical to those with what is now called Non Verbal Learning Disorder. Look at early learning assessments of those with AS. They had NVLD scatter patterns, high verbal IQs and a discrepancy between their verbal IQs and performance IQs with slow processing speed and deficits in math facts. A distinction between AS and HFA could be seen in these studies. However current similar studies show conflicting results because sloppy diagnostic procedures have resulted in those who might have difficulties, but not AS, receiving a diagnosis of AS.

My recommendations are as followed:

1. Leave the diagnostic criteria as it is until more brain imaging studies can be done to better understand what were are looking at.

2. Better educate clinicians about adults on the spectrum.

3. Clean up diagnostic practices by standardizing diagnostic procedures and offering certification courses so the clinician can learn to better distinguish AS and current spectrum disorders from other disorders. There is currently a tendency to say every bad little boy has AS and doubt adults who do not present as a character from the big bang theory.

Unfortunately sloppy diagnostic practices seem to be a problem across the field, not just with AS and ASDs. As an example, you would think, for example, that most clinicians should be familiar with OCD. It's a well defined, fairly well understood disorder but you would be surprised how many harbor the same misconceptions about it as the general public. That people with OCD are neat freaks, or control freaks, or that it is all about hand washing.

On another note, those diagnosed with NVLD instead of AS receive no services as an adult. The NVLD diagnosis is only good for certain school based services and I do not even know if children with NVLD are given the same social skills support open to children with AS, despite the fact that they have similar or identical social difficulties. It is also far more difficult to claim protection under the Americans with Disabilities Act if your diagnosis is NVLD rather than AS.

I took a look at the criteria, and my concern is that my son definitely meets the communication section, but the repetitive behaviors section is a little bit of a stretch. He has a friend from preschool who is exactly the opposite -- the other child meets most of the repetitive behavior criteria, but is only borderline for the communication criteria (my son was diagnosed AS, the other child PPD- NOS by the same clinic). They both meet part D, about the issues significantly impacting their everyday functioning. They make a good pair for coached playdates because their strenghts and weaknesses compliment each other so well.

If you look at the new Social Communication Disorder, it is miles short of the social deficits described in the autism definition. So I think they are leaving a huge hole for the kids who have a lot of autistic traits, but only in one of the two areas.

My concern is that without the autism diagnosis, the schools might try to knock us back to just a 504 instead of an IEP, or to push the "emotionally disturbed" label.

I believe my daughter would still qualify under the new criteria. But she is pretty substantially limited in her social interaction with peers.

She does not go to public school anymore because the public school was a disister with no help at all so I don't really see any change here as far as that goes.

I really feel this is a movement to further restrict the diagnoses made as the public school systems are not able to handle the current numbers of students diagnosed. I don't know what will happen with those HF kids with parents with limited financial resources-sadly, I feel they will be falling through the cracks even more than they currently are.

And does anyone know what will happen with Insurance coverage? Will all currently diagnosed kids have to be re-evaluated to receive coverage for autism related services? Perhaps this is a joint conspiracy led by the schools and insurance companies.

I do definitely agree with this, it's the category I fall into. I am lucky to be married and lucky that my husband has found a job he's happy with so I can stay home. I have struggled most of my life with employment, living most of it at just barely above minimum wage, despite being a relatively intelligent person with 3 undergraduate degrees. When I did get jobs at higher pay, I was, as a general rule, laid off shortly due to an executive function misfire or a problem with understanding social interaction.

All that being said, services for adults are near non-existent, no matter where you lie on the spectrum. I'd love to have an ADOS done, but I don't have 2G to pay out of pocket to the only provider for adults I've found in the major metropolitan area where I live.

Chronos, in your post you talk about a group of adults who don't receive services now. While that is a terrible situation, that is not the point of my story, or the DSM changes.

Helping underemployed or unemployed adults is a major challenge. It's recognized by every AS support organization and by the professionals who work with the AS population. However, recognizing the problem and solving it are two very different things as you know. I wish I had a better answer for you, because there's nothing on the horizon that will make things better in the short term from where I sit.

I do think awareness of the adult issues is increasing and the situation will change over the long term but that's no help next week. For that, as I have written before, all we can look to is ourselves and the resources within.

Best wishes and sorry I don't have more encouragement

The way my brain works, I needed to rewrite this (Edit the way words are presented and define unfamiliar words). Please understand that I am only posting this in hopes to help others to understand this redefining of the criteria. I've noted a lot of people are upset by it and I myself was initially scared as well. However I think it is simply a better definition and it provides us with a single diagnosis rather than a confusing web of various definitions. My daughter for example would be defined as having Autism Spectrum Disorder rather than Asperger's Disorder because she qualifies for A1,A2,A3,B1,B3,B4,C and D.
Please read it all and figure out if you or your AS or PDD-NOS child qualifies. If I'm wrong and it is narrowing the definition, please explain.

My interpretation of DSM-5 Autism Spectrum Disorder Criteria:

A. A person must show deficits in social communication and social interaction in a variety of contexts, this can not be accounted for under a general developmental delay, and this person must show ALL 3 of the following:
1. Deficits in social-emotional reciprocation (mutual benefit) ranging...
...FROM: abnormal social approach and failure of normal "back and forth" conversation
...THROUGH: reduced sharing of interests, emotions, and affect and response
...TO: total lack of initiation of social interaction.
This means, only one of the above is required, not all 3 examples of social-emotional reciprocation deficits.
2. Deficits in nonverbal communication behaviors use for social interaction ranging...
...FROM: poorly integrated-verbal and nonverbal communication
...THROUGH: abnormalities in eye contact and body-language
...OR DEFICITS IN: understanding and use of nonverbal communication
...TO: total lack of facial expression or gestures.
3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers) ranging...
...FROM: difficulties adjusting behavior to suit different social contexts
...THROUGH: difficulties in sharing imaginative play and in making friends
...TO: an apparent absence of interest in people

B. Restricted, repetitive patterns of behavior, interests, or activities as shown by at least two of the following:
1. Stereotyped or repetitive speech, motor movements, or use of objects
This can include:
-simple motor stereotypies (repetitions),
-echolalia (repetition of words, phrases, intonations or sounds of the speech of others)
-repetitive use of objects
-idiosyncratic phrases (meaning use of made up words or secret coded language)
2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change
This can include:
-motoric rituals
-insistence on same route or food
-repetitive questioning
-extreme distress at small changes
3. Highly restricted, fixated interests that are abnormal in intensity or focus
This can include:
-strong attachment to or preoccupation with unusual objects
-excessively circumscribed (restricted) or perseverative (being stuck) interests
4. Hyper- or Hypo-reactivity to sensory input or unusual interest in sensory aspects of environment
This can include:
-apparent indifference to pain/heat/cold
-adverse response to specific sounds or textures
-excessive smelling or touching of objects
-fascination with lights or spinning objects

C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
This means some symptoms were present in early childhood even if more specific social symptoms don't present until school age.
D. Symptoms together limit and impair everyday functioning.
Everyday functioning means to me that one is able to do all necessary tasks to complete a day without incedent on a regular basis. IE get out of bed, brush teeth, eat breakfast, go to school/work, meet and greet people throughout the day, return home, bath, feed pets and go to sleep. In variable orders in general. (This is an example and not a standard)

I think my son, too, could have difficulty meeting the new definitions, even though a very observant evaluator willing to listen to nuance might still put him in.

This statement in the article is obviously true:

"For that reason, I urge all of you to speak up before your government officials, school boards, and elsewhere to make sure they know that a change in diagnostic wording does not in any way change our need for support. "


My son is on his way to being a fully independent and self-supporting adult, but I honestly believe, and I will emphasize this, that I do not think he could have gotten there without the special services and accommodations we have received through school directly resulting from his ASD classification.

If the new criteria are used to leave children like him out of diagnosis, there will be a severe and long term cost to society, because kids like my son won't make it. He was on his way to being a severe behavior problem before everyone figured out he was AS, but once that was noticed, everything changed. EVERYTHING.

It is also worth noting that we could not have gotten ANY services for his hypermobility/hypotonia co-morbid without the ASD classification, because those are not IEP qualifiers. But the child could not learn to write because of the co-morbid, and how that can not be the school's business all on its own is beyond me.

It really worries me that more children will fall through the cracks, especially when I've seen first hand how much difference an IEP can make for one child.

The issues with adults are a whole other ball of wax and not an area I am as well versed in, other than knowing how difficult diagnosis can be. My son will leave his behind when he graduates from High School, given that we have a district "tentative" diagnosis only, and I think that will be fine for him, as he has learned the work-arounds and adaptations he needs to. But for others that isn't going to be true, especially if sensory issues are severe.

Which leads me to another point: if severe sensory issues, anxiety, stress or depression are enough to qualify an adult for support without an ASD classification, then perhaps it all works out, as those are often big reasons ASD adults have trouble maintaining employment. But if the world continues to leave big gaps in these areas, failing to recognize how debilitating they can be, then things will get worse.

Here's yet another article I found, which explains why this is in the news again suddenly when we'd all had this discussion some time ago. It pretty much reiterates what Mr. Robison's article says, but in much more detail:http://thinkingautismguide.blogspot.com/2012/01/dsm-5-autism-criteria-clarifying-impact.html

The key is "good diagnostician." We've had a good one and a bad one; translated into services, bad diagnosis got us a 504 that was barely keeping DS glued together, good diagnosis and he's receiving therapy specific to his deficits and is functioning nearly "normally," whatever that means.

Yeah, I don't know that it would make a difference for us. My daughter was diagnosed in the seventh grade (after years of struggle) with aspergers. It really did fit what her struggles have been. But she's very smart. She qualifies only for a 504...because she doesn't fail any tests. But she's a mess...and the things that she could use....sensory integration support, organizational skills support, isn't offered. She can do great on a final test, but can't organize herself to consistently keep up with course work and everything gets lost. I'm worried about her success/failure in HS because there ARE NO supports for someone as high functioning as she is. I think there really does need to be more support for people who are diagnosed...and for us there just isn't. And as a single mom on a limited income, I can't pay for premium services....so I do what I can, and hope she remains above the many and gigantic cracks in the school system.

Bethaniej, we got this line from our schools, to - turns out, social development IS their responsibility. If she needs pragmatic speech therapy or social skills class, an OT or executive function support, they need to provide it. Search Wrightslaw.

Thanks...I tried to ask questions this year about what kind of services could be made available to her because of her diagnosis, and they gave me the same line as when she was first diagnosed...that social issues were our responsibility.

I think it bothers me most...that children with reading problems get help...children with a math disability get services...but if you are organizationally disabled (which my daughter very much IS), there seems to be no support for that, accept hiring your own tutor.

Don't get me started though. But thanks, I will look into that.

Bethanie