What does it mean to lose an autism diagnosis?
November 5, 2008 by Kristina Chew, PhD
Filed under Health
Some children—-like Preston Brown, according to an ABC News story today—-lose their diagnosis of autism. According to the article:
……a dropped diagnosis is not the same as a cure, and it doesn’t happen in most children because the origins of their autism are different
Not having an autism diagnosis does not mean one doesn’t have autism……
I think this is the defining point of Jenny McCarthy idiocy!
i lose my diagnosis every now and then.
every time, without fail, i rediscover it under the couch cushion (right next to the tv remote, 4 pen caps and a cashew).
Weiss ich nicht was wunscht sie alle sheissenbubben das sie sind.
And that is being polite
Weiss ich nicht was wunscht die alle sheissenbubben was die bist (now is that not a forest of dean accent or not?)
Hello friends –
I am no fan of the existing behavioral fuzziness involved with diagnosis, but if we lose even that, do we have any metrics at all for what autism is? If our goal is to lobby for the support our children need educationally, don’t we need some way of defining a condition that mandates additional (or different) education? If we would like insurance to cover therapies, don’t we need some type of classification?
I can see being never being diagnosed but still having the behavioral classifications of autism; but I struggle to see how you can have the behavioral classification of autism, get evaluated, and fail to get some type of diagnosis.
Even our poor system is a system of sorts; without it we run the risk of giving credence to the likes of Dennis Leary et all; that autism is nothing more than dumb kids or over worried parents.
Just because the loss of a diagnosis does not fit with many of our experiences does not necessarily mean it is not possible.
- pD
Metrics me passionless pal, gawdon bennet! I thought the USA was the last bastion of Imperial….
Losing a diagnosis is carelessness, I think.
Just had to get my Dr to reconfirm it today, for records sake you know
Incidentally I also managed to succesfully self dx at the same time with benign paroxyismal positional vertigo. Yeah I walked into my GP surgery and said that I reckoned that I had it, and do you know what? I do ……
So there you go you don’t need a medical degree to recognise a dx.
Frightening isn’t it when you can outguess your DR.
LR
Ich bin nicht sicher dass Ich Sie verstehen, aber, Sie haben mich lachen gemacht!
;0)
It’s usually adults who seek to be undiagnosed (although I think it’s fairly rare).
The DSM-IV lists a number of criterea for autism. For a diagnosis, there must also be significant impairment (presumably because a diagnosis is a passport to services):
“The disturbance [must cause] clinically significant impairments in social, occupational, or other important areas of functioning.”
So if you meet all the criterea for autism except ‘clinically significant impairment’, you won’t get a diagnosis.
Conversley, someone with a diagnosis may in time develop coping methods and decide that they no longer need or want a diagnosis (perhaps because of discrimination?). They will then seek to be ‘undiagnosed’ by a professional.
The thing is though “clinically significant” is a highly variable notion dependant on a lot of external circumstances and judgements that have little to do with the individual themselves.
As I have said before clinically significant is a crazy idea, when you consider that there are many medical conditions, that when well managed are invisible, therefore not significant. They are still there of course, just under control.
Autism is of all conditions one of the most socially mediated, one of the most variable. One person will get the dx, the next won’t because they had the gall to crack a joke or use an idiom.
I had my technical diagnosis dropped when I was little, before there really was a strong notion of autism as a spectrum. I can’t tell you how much harm that may have done. It certainly wasn’t cool to try and explain my life without the context of autism at all. I generally don’t support doing so ever, though I’m not going to be programmatic about it. But there are a lot of issues involved there. (It’s easier, though, if it’s an adult making an independent decision to do that. But that presumption can’t be made)
Cliff
I consider the diagnosis (Asperger’s) for my son to be a tool that offers him some level of protection under the law because it defines him as having a disability. I think the only emotional significance that the diagnosis had for us was relief that someone else finally understood what we were talking about since the reassurances that he would “catch up” or “outgrow it” had long since stopped reassuring us. I have never considered losing the diagnosis to be a sign of victory. I consider every accomplishment that Nicholas has to be a victory.
We finally got a full evaluation after a long time of pushing for it. We were told that our son is right on the border, and they had decided not to give him a diagnosis. At the same time, they acknowledged that all of the paperwork we had sent them from the previous 18 months suggested he would have received one even 6 months earlier. Then they gave us a list of other things that we could do to help our son–therapies and services we can’t necessarily get through the schools now because he doesn’t have a diagnosis.
I remain convinced that most of my family has Asperger’s–but we’ve all learned to cope well enough that we probably couldn’t get diagnosed.
I see articles like this quite a bit,and they are all pretty generalized,like this one is.I have real issues with the “spectrum” concept,although it clearly enabled me to be diagnosed.You have no idea how many kids like this,were thought to have mild Asperger’s,and were counted as “autistic”. There is obviously a greater use of the diagnosis than there used to be,for whatever reason.
I hate stoop to a level of who is “more autistic” than whom,but should the diagnosis of someone who is verbal,but otherwise shows all of the signs of severe Kanner autism,be equated with the diagnosis of someone with “mild” Asperger’s?
Not to start a flame war here,but perhaps,as many have suggested,we need to reevalute the idea of an “autism spectrum”,and what we include in it.
I hate stoop to a level of who is ‘more autistic’ than whom,but should the diagnosis of someone who is verbal,but otherwise shows all of the signs of severe Kanner autism,be equated with the diagnosis of someone with ‘mild’ Asperger’s?”
Don’t consider this “flaming” (discussion is never a bad thing), but I’m going to answer yes, and there’s a number of reasons for that. For an easy target, it’s not as static a category as it claims to be. People with the same epidemiological condition can have different skill levels at different time, and yet that doesn’t fundamentally change their condition. What is underlying would be the same, regardless.
But I’ll expand that to note that it’s hard to determine epistemologically to substantiate that on a basis of that level of skills. The fundamental general patterns of behavior are the same. Why would you be able to differentiate that on the basis of “degree” (to be clumsy for a second) and not type? That kind of exclusionary mechanism is a very dangerous thing. To then separate into subcategories based on “degree” is another matter, but determining the broader condition is important. Now, there is obviously some exclusionary mechanism somewhere, and I will fully admit when I find that barrier being pushed. But when you talk about an “autistic” person, and taking a stereotypical autistic for sake of argument (so we’re talking about a sad, non-verbal seven year old, of course), those same kinds of fundamentally similar patterns of behavior are across a broad group of individuals. And many of them happen to be functional as any.
So I would defend the concept as it stands, right now. I’d also let it go to its length, and thus I’m not really concerned with how many people we include. If we want to identify a common thread like that identified in autism, we might as well be frank about how many people it really encompasses. It gives a different, more inclusive and more accurate, construction.
Cliff
Autism diagnosis as heuristic device, following up on what Beth wrote………vielleicht…….
And gather that McCarthy is wearing “tired of autism” on her wrist.
I tend to agree with Roger.
A great number of people have autism traits, but does this mean that they all have a disability? The concept of neurodiversity suggests that they don’t.
Because a diagnosis is a passport to services (of limited availability) there needs to be some mechanism of deciding who is in most need.
Simon Baron-Cohen has put forward the extreme male brain theory of autism and some people think all men have autism traits. Should all men have a diagnosis?
One important principle is that a diagnosis in itself should never drive services, that creates an artificial an insupportable division that goes against the natural order of things.
Disability Living Allowance in the UK is calculated not upon ones diagnosis but according to the degree of difficulty one has with various daily living tasks.
The diagnosis really only exists to give some foundation to the claim as to why such needs occur.
playing a game of who is worst is riducolous. I walk with a cane, that creates a different set of difficulties to someone who requires a wheelchair, but in each instance there is something that requires adaptation.
My mum for instance discovered at a certain point that using a wheelchair gave her more mobility and funtion than struggling on two crutches.
As I have pointed out, would anyone deny a diagnosis of diabetes to someone who was well controlled or epilepsy to someone who has not had a fit in years because the medication they take prevents it. The medication has not cured there epilepsy has it?
Epilepsy is perhaps even more invisible than HFA, in that most of the time there is no diminution in mental or physical capacity whatever, one is indistinguishable from ones peers, and yet epilepsy has a huge stigma about it.
While I did mention that, for us, my son’s diagnosis is a tool, his services are not determined on that basis alone. There are many with Asperger’s who do not have associated learning disabilities and, therefore, may not receive special ed. Testing is done every 3 years and services are determined based on the testing and quarterly progress reports from his school based on classroom performance.
As for the notion of not including people with Asperger’s or HFA in the same category with those with classic or Kanner’s autism, there are other conditions such as Cerebral Palsy where there is a broad range of ability and disability. I still think that AS and HFA belong in the same category.
My son has the PDD:NOS dx, but that’s not how he gets his school services. Actually, he is 7 and only got the dx this year; he’s been getting services of one kind or another since before age 2 based on his “symptoms” (via various evaluations). Even now, his school district doesn’t care about his dx. Perphaps we are lucky?
Another reason to think twice before undiagnosing a child, is that autistic people are very well known to lose skills at various intervals in our life times (most notably at toddlerhood and adolescence). So even if there’s not “clinicallysignifican” difficulty now, in this environment, with a few years time, or a move to a different place, things might change dramatically, and you want to have the supports and services you need access to them, except many people who were thought of as just “a bit socially awkward” end up struggling to do tasks of daily living and communication.
The “extreme male brain” theory is unscientific nonsense, which I’ve written about a bit on my blog. So, no, obviously not all males qualify for an ASD diagnosis to any degree.
I’d like to think that services and supports aren’t a zero-sum game, as some seem to be suggesting here. Of course more disabled individuals deserve support, but so do so-called “higher functioning” individuals. We shouldn’t think of it as one group taking resources away from another. I think the truth is that diagnosis is fuzzy under the current system, and some degree of misdiagnosis is inevitable. But that doesn’t mean it’s a good idea to somehow ration diagnoses, or “undiagnose” people.
My partner was sort of “undiagnosed” with autism around the age of 5 or 6. I don’t think it was anything formal, just that his family seemed to think he’d grown out of it or something. Much less was known about the spectrum at that time. He was diagnosed with AS about fifteen years after that. Had his family realized the permanence of autism, maybe things would have been easier for him. I don’t get the need to “undiagnose” autism.
My 7 year old daughter was diagnosed with PDD-NOS at age 3. She had a lot of the classic symptoms — lining up toys, spinning in circles, pacing, sensory seeking but auditory defensive, would repeat lines from movies in response to questions, literally 30 meltdowns a day — some lasting an hour or more, extremely rigid in her routines, refused to play with other kids, etc.
But now at 7 she doesn’t have ANY of those symptoms anymore. I don’t know if it was due to early therapies (sensory based OT and social/play therapy) or if she simply outgrew them. She still has several “quirks”. She still cries 1 – 2 times a day at school (although not for too long) and she’s still awkward in social situations. But she would probably not get a PDD-NOS diagnosis if she were to be evaluated now.