Aspies For Freedom

My diagnosis was lost.  I was diagnosed by a clinical psychologist many years ago.

Recently, I contacted the clinic for information about my file.  I was told that they do not give out personal information about their clients (a good thing) but that after ten years they destroy all files.  The psychologist that I saw has retired so I have no way of contacting him.  I am not even sure that he is still living.

I do not particularly want a medical diagnosis on my records.  I am still very afraid to disclose my diagnosis.  

Disclosing a diagnosis for some people could mean losing their jobs, their marriages and custody of their children.  Ironically, having a diagnosis where I live means almost nothing in terms of support for getting employment, disability pension or housing.

It depends on the area, and luck somewhat.

A declared diagnosis could help some, but could be held against others.

Until there is better rights for us, and less ignorance, it won't change much.

Good old Canada for you, most provinces and all won't do much for higher functioning autistics period. It's a shame, I would go for an official on record diagnosis but it's not going to help me get support to get a job, disability or such... at most it would likely cause issues with getting employment and custody of my sons if that becomes an issue.

Nova Scotia.   Check your province's disability and human rights legislation.  In Ontario, I only need to "self-indentify" that I have a disability, not disclose, to get accomadations in the workplace.  I could complain about discrimination against my "disability" whether I can prove it or not.  As well, if I am harrassed for being perceived as having a mental health issue, which I do not have, I can ask for justice.  But the legislation does not help me get a job that I do not have, only protect the one I do not have.

That's fortunate, M.  

Over here (England), you're damned if you do and damned if you don't.  In relation to a different, physical disability I acquired after an accident, I recently asked for some accommodations to be made with facilities at my place of study, a reputable university.  They are legally obliged to make 'reasonable adjustments' pursuant to the Disability Discrimination Act.  But they didn't.  My course director believes that only people in wheelchairs and who are blind are 'disabled'.  The head of my department helpfully suggested that in order to have my disability issues addressed, I ought to 'register' myself as disabled, but I'm not quite sure where, or with whom, because there's no such thing as a national disability register or anything so ludicrous as that.

It would be really good to be able to self-identify, but if it's impossible even for a pretty obvious physical disability I don't hold out much hope for me being able to self-identify with something like Asperger's.  Which means I must go for a formal diagnosis and it goes in my medical records (along with all the hassle and grief of pushing for the the formal diagnosis, I'm sure I'm in some file as 'query delusional' or something, because I'm so insistent, I *know* AS applies to me, yet to the 'experts', who aren't actually experts, I'm coming across as someone who *thinks* - to them - she knows better than the 'professionals').

The more I think about it, the more I feel affronted about having to be diagnosed as 'me', before I'm allowed to be me.  The more I think about disability rights and self advocacy, the more I compare our situations with other civil rights issues in the past (and, like what has society learned about their struggles, that it puts us through the same tortuous process to recognise our rights?).  

I mean, in this day and age, no one would ask a gay person to go and get a formal diagnosis of themselves as 'homosexual' before accepting their rights to live without prejudice and discrimination, or someone from an ethnic minority.  

If there was some discrimination or prejudice, at work, or in school or university, or in the community, would anyone else subjected to prejudice and discrimination, such as gays, transgendered, or blacks or asians or travellers or whoever, be told, you can't make a formal complaint unless you show us a medical certificate with a formal diagnosis saying you're gay or asian or whatever?   :?

Sorry, but the more I think about this, the more affronted and angry I get. :evil:

It does seem that your case is a lot of fuss and bother to get them to do anything.  It seems that your college/university is not familiar with the human rights laws and how to react to them.  You might need some kind of person there to act as an advocate.  Most likely by the time anything is done, you will have already left there.  You might make things easier for the next person who needs accommodations but not for yourself.  

Asking for a reasonable accommodation depends on what people consider as reasonable.  A few people, usually visibly disabled, have been going around asking for very unreasonable accommodations in a very confrontational and rude way.  Usually it is something like demanding that an elevator be put into an very old building when other reasonable accommodations are offered.  For example, a child who can not use stairs is scheduled in a classroom on and upper floor.  The accommodation offered by the school is to move the child to another class or move the whole class downstairs.  But some parents are insisting that the school install lifts or elevators.  

For such accommodations as handicap parking, a medical certificate must be presented and the permit displayed at all times.  This is because too many people who were not disabled were abusing the privilege.  That requirement was put in place not to confond people with disabilities.

Any invisible or nonevident disability is difficult to get people to understand.  I used to actually think I had a hearing problem because people were always asking me why I did not hear them.  I have a hard time concentrating in noisy environments or when I am concentrating on a task.  I ask people to make sure I know they are talking to me, look at me and make sure I understand.  I got my hearing checked.  It is normal physically.  It is more of a "listening and understanding" problem.  But then I would get people yelling at me "why don't you get a hearing aid?"  So some people just do not understand how I can hear but not listen and understand.  But why should I have to try to explain all about how my brain is different and what I really do not understand.  Usually I just tell them I am hard of hearing.

Here in British Columbia it is possible to get income assistance and job placement based on the co-morbid issues that come with Asperger's.  We have two levels to our income assistance for disabled people. You are either designated a "Person with Multiple Barriers to Employment" or a "Person with Disability." If you are designated "Person with Multiple Barriers to Employment" then you are requested to enter employment programs that advise the jobseeker on how to disclose to potential employers. In contrast, if you are designated as "Person with Disability" you do not have to seek employment, but there are schemes were you can be placed in a job with special monitoring from an assistant.  My diagnosis has included the information that I should be placed in employment where I can use my strengths and that I should be given on site assistance to deal with the social environment.  I'm concerned that this means that I, with higher than average IQ, and a university degree, will end up being dictated to by some gum chewing moron NT who will treat me like I'm mentally retarded. I can see that they might place me in a job where, once again, I will be oppressed and exploited by a bunch of NTs who by virtue of their ability to fit into slots will have power over me. None of this has come to pass yet, I will have to see how it goes. I hope to be designated Person with Disability and decline to participate in one of the sheltered employment schemes so that I can use my gift to get myself out of poverty.