Conditional Disability

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For some reason I've been feeling very angry today about how my diagnosis of autism is conditional upon me not being able to live independently. It makes me afraid to visit a psychologist for other reasons because I don't want to "lose" my diagnosis now that I'm able to live on my own (nevermind the constant struggles I face). I just wrote up a half-drunken but I think still coherent essay on the subject: http://crowdedhead.blog.com/2013/01/03/ ... -disabled/

I know I'm probably preaching to the choir here, but I'd welcome feedback.

I'd also like to know if any of you feel that something can be done about this. I've been told from a young age that I'm a very good writer and very persuasive in written form despite my awkwardness in person. I keep coming back to the idea of writing a book, but I'm afraid I'd start the project and never finish, or never get organized enough to make it work... But it must be possible to educate people, right? Books change the world all the time, you just have to know the right way to say things and have a connection or two to get the word out... I've been published before, but only in gaming. It's easy enough to self-publish, but getting the word out, that's the thing... I thought this blog might make a difference but I've realized very quickly how difficult it is to get anyone to actually *read* what you've written, no matter how good or interesting or important it is.

It seems there are a lot of hurdles to get over first such as...

- actually taking mental illness seriously. (stop telling people with depression to just cheer up already, or people with schizophrenia to ignore the voices in their head like it's an easy thing to do) I don't think many people realize that mental illness is just as real and serious as physical illness. I bring this up because I've seen people assume that people who look fine are fine, or that mental stuff in general just isn't as important.

- the difference between mental illness, emotional illness, developmental disorders, neurological conditions, disorders vs. syndromes, all those technicalities that actually do make a difference

- acknowledging that there isn't one specific normal that everyone should strive for

- normal or functioning =/= happy

- stereoptypes don't hold across the board for the autism spectrum, or any group

They're basic assumptions that people would need to understand your argument, and they might take a while to sink into the public consciousness.

I seem to share some of your traits. I was diagnosed as having Asperger's by a clinical psychologist last year. I do have avoidant personality disorder and I blame that for keeping me out of social circles as opposed to just the aspiness alone. I say that because there are aspie meetup groups all over and I go to none of them.

I got laid off last year so, to bide my time, I took up writing again. I wrote about 40 short stories, five novellas and one novel. I started the novel in September and I'm not finished. Believe me, just tying the first line of the first paragraph was torturous. Was I going to finish this? An attempt at an 80,000 word novel? Once again, slow and steady winds the race and I completed it. I did have a strict writing regimen, though. If I wrote 1000 words/day then I was okay. I had to do this otherwise I would've procrastinated infinitely.

I didn't want to self publish because I feel I still need somebody to hold my had, pat me on the back and say, "you can write."

Is it really as simplistic as that? That you can only get a diagnosis if you can't live independently? I don't think that's correct from everything I've read and experienced.

Is your country interpreting the criteria in that way? I don't believe it's that way elsewhere.

I never heard of this. I thought people actually lose their diagnoses if there are no impairments anymore, not if they are living independently.

Just because you can live independently doesn't mean you won't have the significant impairment needed for diagnosis. For example, let's say a guy who lives independently and is employed, but has no friends or lovers and is chronically depressed. He'll be considered impaired by a psychologist (after all, for many diagnoses, such as depression, inability to live independently is actually only present in the most severe cases if at all).

But I do agree with your general point. Given that autistic traits can cause impairments in some settings and not others, requiring clinically significant impairment doesn't make sense. You don't stop being autistic just because you go to university and suddenly find that all your quirks become an asset or irrelevant (which is fairly common). Or eventually learn enough social skills to get along with others reasonably well.

There are a few people who outgrow autism. In their case, it's pretty clear that this is a genuine change in their personality and thought pattern, not just learning a few coping skills or finding an autistic-friendly environment.

If my wheelchair-using friend can swim independently, does that mean she doesn't have CP in the pool?

You should consider writing a book, with illustrations and diagrams, since you are good at writing and art. I really like your drawings that I saw on your tumblr blog, eggspecially the left handed landscape. I think that a book that takes an eggsplanatory approach, like you did with the detailed perception, would be good and bester than autobiographical approach that many autistic authors take. Straightforward makesensical eggsplanation is the way to go, I think. I don't like to read books about autism because they are too autobiographical and I eggstremely don't care about the details of the people's lives and various incidents that happened and their family members.

Since when was how / where you live a criteria for diagnosis? Some disabled people do live alone; but they have carers come in every day.

Independence is but one of the "important areas of functioning" that needs "clinically significant impairment". The others are social, vocational and educational (self-help skills as an adult is another).

You need one, not all.

Also, living independently: what does it mean? I mean, I am married with children now but I am currently supported by my husband. That would be considered 'normal' and perhaps independent (because I am not living with parents or in supported accommodation or a psychiatric in-patient). But I'm not truly independent. I have lived alone before, mainly with an all-inclusive rent so I didn't have to worry about separate bills to keep on top of. For a huge part of the time I lived alone in that way, I was reclusive and alone, only seeing other people when I went to work - is that a satisfactory existence without impairment?

Yes, I fed myself and went to work, but my socialising skills were such that I never initiated friendships and had no social life for most of it, and my phobias caused me to run into the street in the middle of the night in panic and when I was ill I had no-one to look after me and had to go back to my parents to recuperate. When I was sacked from my job, I lived on 2 Pot Noodles a day until (at 5' 8") I ended up weighing seven and a half stone (105 pounds), because I struggled to find another job and didn't know how to get social security help (I tried but was too niave and couldn't deal with the red-tape problems).

On the occasion that I did live in a flat with separate bills, I paid the bills because of my fanatical Aspie adherence to rules, but the whole concept of bills and terror of being behind with them was highly anxiety-causing for me. My traits have worsened over time, I would no longer be able to support myself if I had to, my executive dysfunction, I have come to realise, is such, that the smallest distraction means I cannot plan or organise my day. When I was alone, I had such a routine that I could just about manage to do what I needed to with the help of copious lists and diaries and calendars but a miserable existence. Now I am too distracted and anxious to even make lists or keep diaries. The psychological weight of trying to be normal for those preceding years has caught up with me. I have been in and out of mental health services since I was seventeen and now everything has crumbled and I am functioning day-to-day with the smallest thing able to cause me immense problems. So whilst someone may initially appear independent and 'able' to the untrained eye, the reality is very different and at great cost to someone's overall life.

What qualifies as "impairment" is entirely up to the person doing the assessment, and I've heard wildly varying ideas of how it is defined.

My issue is not with the definitions of impairment or independent living. My problem is with the fact that "impairment" is super-glued onto the definition of "autism." The two should be assessed separately. Question A is whether a person has autism, and question B is whether that person is impaired in any way or needs any kind of assistance.

It is possible to be autistic without being "impaired." Depending on what doctor I visit, someone might tell me I don't qualify for an autism diagnosis of any kind because my symptoms do not always interfere with my daily life, at least not to a level significant to many doctors. I've got a nearly full-time job, my own apartment, and no outside help with the administration and responsibilities of my life. I have friends and have had several "long-term" relationships. Most people cannot believe that there is anything wrong with me. But I still suffer and struggle every day in ways that I work very hard to make invisible.

Even if I didn't struggle, I would still be autistic. I would still have my detail-oriented perception, my obsessive nature, my poor proprioception (and poor gross and fine motor skills), my stims, my difficulty with non-verbal language... No matter how well managed to live my life and blend in with society, these things would still be true, and I would still be autistic. It is the way my brain works, plain and simple. It's not a psychological issue that can be overcome with therapy.

But according to the DSM, I would NOT be autistic if it didn't interfere with my ability to lead an independent life. And THAT is what bothers me.

Has anyone ever seen the "Brainman" special on Daniel Tammet? He is taken to a "specialist" on autism and assessed for the first time in his life. The doctor says that "technically" he is autistic and shows absolutely every single sign and trait, but he cannot be diagnosed with autism because it doesn't seem to interfere with his daily life - "somehow he has managed to adapt to our world" are his exact words. And yet he is CLEARLY autistic and goes into great detail about his condition in his books. How can something like this happen? How can a person be told they are legally not something that they clearly are, simply because they don't require assistance? It is ABSURD and offensive and it still makes me angry to think about it.

That I absolutely agree with. Especially as it's a spectrum. I mean how can you have the symptoms of autism and not be impaired? For instance, surely getting so hung up on the details of something that it affects your ability to make decisions or gives you huge anxiety, is a type of impairment. Even if you have friendships, that doesn't mean that they are enduring, true friendships, that you don't suffer trying to maintain any socialising. It's the clinicians that are deciding if you are impaired or not, and as you say, it's subjective.



But does it actually say that? Or is that what your clinician has said? I thought it said stuff about impairing you in your life, not anything specific about whether or not you are leading an independent life. I'm sure there are many diagnosed autistic people out there who live independently. How successfully that is, is another matter, if they don't ask for help, no-one knows their pain.



But is this not just the opinion of that particular specialist, and his interpretation of the DSM? Don't forget the DSM is also only the American book of knowledge, in other places the IDC is used. And even bearing that in mind, they are only books based on the currently understood interpretation, not written in stone (and if they were, they wouldn't do revisions!) It's amazing how we get focused on what that little piece of paper says. I understand why you feel that way, but I still think that the particular clinician that you dealt with has done you a disservice if they have interpreted the criteria that way.

You can be independent and have a diagnosis of AS; it even says many are capable of gainful employment and independent living in the expanded text in the DSM-IV-TR.

Autism as a label and impairment are one and the same (since it's a medical condition defined by impairments), and there's no ifs and buts to that; the symptoms cause impairment. In the case of someone who has various "features" of an ASD, but isn't clinically impaired in one important area of functioning, then they don't have it; they'd have what is called Broader Autism Phenotype, which is a subclinical ASD (there's no label for it though due to the fact it's not needed). Most of the features of ASDs can be found in the normal population; there's bound to be someone who has them all that isn't impaired (whether through severity and/or everything just falling into place).

Last edited by Dillogic on 04 Jan 2013, 1:28 pm, edited 1 time in total.

The exact wording from the latest draft for the DSM-V (which will be implemented soon) is this:

D. Symptoms together limit and impair everyday functioning.
Full text located here (not the original source but that seems to have been taken down): http://educandoconamor.com/ASD_-_New_Diagnosis.html

Without meeting this criteria, the person cannot be diagnosed with an autism spectrum disorder. I'm not particularly opposed to grouping asperger syndrome and classic autism together (though I know a lot of people have reasons to be angry about it, I'm more on the line than most aspies so it doesn't affect me too much), but this one thing is just horrible.

I know that this isn't the worldwide universal rule for diagnosis, but most specialists refer to the DSM for assessments and you can't get a diagnosis in many places without meeting the DSM criteria. That doesn't mean all specialists agree with it, but most of them have follow the DSM, plain and simple. I'm sure plenty of people who lead independent lives can still get diagnosed if they go to the right doctor, but the fact that this is even a consideration, and especially that it would be included in such a respectable publication as the DSM, is what's upsetting me here.

I meet criteria A B and C without any question at all, but it would be up to a "specialist" to decide if I meet D. Why? Why is this part of the diagnosis? If a person is autistic but their everyday functioning is not limited or impaired according to the doctor evaluating them, how does that make them any less autistic?

Which means that you're limited and impaired in everyday functioning. That doesn't mean you can't be independent, it just means something in your daily life has to be impaired and limited by the symptoms in comparison to age and IQ matched peers without the symptoms.

You might have no friends, but you work and live by yourself
you might have problems with self-care and maintaining relations, but you have some friends and work (but you live at home still)
you might not work, but you live by yourself and have a few friends
you might have friends, work and live by yourself, but only due to allowances made by others
on and on and on

Aren't all these things covered by A, B, and C? What is the purpose of adding D? Why does a subjective assessment on the part of the assessor on whether or not the person is limited or impaired in everyday functioning even a factor? If I meet A, I have social deficits. If I meet B, I have restricted and stereotyped interests and behaviors. If I meet C, this has all been consistently true since early childhood. All D says is that the doctor has decided that I'm suffering enough to meet their own personal standards.

Again, we can argue all day about what constitutes "impairment." That's not the issue I have. The issue I have is that according to these criteria, if you don't appear to be limited or impaired in your everyday life, you magically do not have autism, even if you meet every single one of the other criteria.

Whether you are limited or impaired is a consideration when it comes to whether you need assistance or not. It does NOT determine whether you have autism. I have friends, work and live by myself, because the people in my life (including at work) accept me as I am and make allowances for me, and I take steps to limit my sensory exposure by doing things like wearing headphones. Does that magically make me not autistic, if the doctor assessing me sees my life and considers me unimpaired? It's absurdity.