Aspies For Freedom

For me my self DXing wasn't for an 'excuse' for anything, it really just helped me understand who I was, how I acted and how I didn't have to 'try' to be like everyone else in my life/reactions/social ways/needs etc. I feel more comfortable knowing that, even if I only have AS traits, that there is a reason behind why I am the way I am.

I actually to enquire about getting an official diagnosis (via email) and I asked the guy:

me: what do you feel the benefit of an official diagnosis is over being 'self diagnosed'. Is there more to be gained than simple peace of mind?

To which he replied:

Richard: not sure I can answer that one for you
some think they need someone else to say it, many come self-diagnosed and I think are often right!

I guess it depends if you want to pay someone $600 (thats the cost here for me) to tell you you have AS or if you just happy in your own knowledge or your self. I guess it also depends WHY you want a DX.

Nah, I don't really think it's about anyone in particular - I think people tend to turn up at the forum with the anti-self-DX idea already in their mind.

Still keen on hearing the other side of the debate - if there's actual issues around this topic, it would be good to know what they are.

Another possible option would be to invent a step-by-step "peer review" diagnosis process - get the diagnostic process worked out accurately enough that we could train people on the site to diagnose nearby potential aspies... Could be a good excuse to connect to AFF members in the local area, too.

Apparently Tony Attwood's clinic is in Brisbane - when I've got a bit more time, I might email them asking for some advice on whether this is realistic...

The only problem I can see is that a false-self-DX person would dilute a conversation valuable to aspies with comments not true to aspies...

Sorry? It was a shot in the dark, far from my opinion

   Me in a nutshell, Except i was good at picking up innuendo that no one else did, but anything everyone got..  I'd be out in the dark. (I was taken to a pediatrician because I spoke complete sentences or thoughts as one word, and thought I was slightly deaf)

I have NO problem getting up in front of many people. But I get an.. "itchy" feeling if I spend too much time with people, then I need to be alone. I can make eye contact, but not unless its consciously. I spent most of my life alone, I had few friends, and the length of that friendship was inversely proportional to the time spent with them.

  I was told by my doctor I display many signs of aspergers. (We had been investigation the possibility of Bipolar or Cyclothymia) I researched the 'disorder' and found many interesting facts. Most of all is that I 'click' with aspies. Many of your stories are like my own, which is amazing, I figured I was a one of a kind nut who didn't fit in with society.

  My doctor told me to stop short of getting an official diagnosis. He told me now that I know what I am, I can work towards making my life more enjoyable by interacting with my 'long lost family.' He told me to think it over and consider carefully, he supports my conclusion of asperger's but says to be wary of other pitfalls that you may not be aware of untill you stumble into one.

He told me that if I was officially diagnosed, and I filled out life insurance forms, (for example) I would have to answer Yes to having been diagnosed with a condition.

   Have any of you had a problem of some sort where a diagnosis such as aspergers has resulted in paying more or being declined for something?

Insurance is a problem for me too. I actually have some coverage in relation to DX, but there is the problem- The last people on earth I would trust to use a diagnosis to my benefit is my health insurance company.

I've found a place that will diagnose me. Ironically it is a facility I've used before, but I live 2 states away from it now. I'm planning a road trip as early as January.

SICKO was a neat movie.. But I would have appreciated a host with more charisma.. Moore gets dismissed by some audiences purely on looks.

I am semi-self-dx. Doc says I have many traits common to AS. He won't officially dx because he doesn't like labels. Took a few 'net tests.  Got a 191/200 on the Aspie Quiz. But I already knew I was Aspie.

I am hit with the "lazy" and "underachiever" tags by people alot, which really grinds my beans. I was honor roll in high school, dean's list in college (2-years). Have a 121 IQ, with a Verbal sub-test IQ of 131. I am also unemployable. Do people honestly think that someone with a mind active enough to support those numbers is lazy? I think that since alot of people don't like their jobs, they think having an "excuse" not to work would be a great thing. I would give about anything to be let loose on a job where I could put my mind to use. It is SO frustrating to be more able, intellectually speaking, to do just about ANY job than most, but not be able to do even the most menial work. Too much of any job involves socialization. That's where I have no skill whatsoever. Some days it is so hard to not mouth off to the guys that pick up the trash around the apt complex where I live that give me attitudes because I don't have a job. How humiliating is it to be looked down on by garbage pickers?

This post is angrier than I intended it to be. Sorry. That "excuse" thing really gets to me, though.

I think its much harder to get a clinical diagnosis in the US because of cost and I know people shy away from it because of the fear of stigma/discrimination. Some of the Australians here have complained about the cost too? Is there some stupid part of health insurance clauses that it won't cover this kind of thing, or it pushes up your premium?

I'm British so at least I could go through the NHS. I needed a diagnosis for myself, but also because years of never knowing meant I developed clinical depression. I could never understand why I found life so difficult, especially social things, why I trusted the wrong kind of people etc. Now I know, the symptoms of depression have alleivated but its had a knock on effect on my perception of the world. I can't honestly say I totally trust other people now - I've got more trust for other Aspies because I know they can't 'play the game' either but thats about it. I need the relevant support network that would really only be afforded to me as an 'official' Aspie. Whilst I feel much more happy now - I can't stand the majority of humanity to really care what they think of me behind my back so thats never really been a factor - I know there's a chance that one day I may relapse into depression and if/when that happens I know I'll need counselling relevant to people with Aspergers. I need the extra help at university in terms of assistance with my executive functioning (which is crap and at second year level I can't blag my essays and exams anymore... mind you I did in December with Sociology of Scotland... no no Lorna naughty *smacks own hand*) and I'd only get that with a diagnosis.

I always think 'making it official' is better if its achievable because of the freedoms it affords. However I can agree with some criticisms of those who self diagnose, because when I was full blown depressed a lot of people were like "oh everyone has depression". Some people use depression as an excuse for their problems and for those of us who are stumbling through life seeing suicide as a perfectly acceptable way out, it almost makes depression look like a made up illness. I'm not insinuating that I've seen anyone here do that (I haven't) but I can't understand why people are wary of it. Also some people are Aspie, never know it and beyond being the freak/geek at school who got bullied, grow into happy if eccentric adults who don't really seem fussed about being the odd one out.

can't understand - can understand. Doh.

See, I disagree that the label of AS can hold you back professionally. Elements of AS can hold you back, but not the diagnosis of it. However, saying that, I'm in my twenties and I fully realise I live in a different career world to someone who is now in their sixties.

I tend to think that acceptance of Aspergers in an individual is good in learning how to live with the difficult aspects and how to bring out the best. Whether thats garnering a support network around you as a self-dx (which as far as I'm aware is pretty difficult in real life, I think you're restricted to the internet), or utilising the support groups available to a dx-ed Aspie. My uni society is relevant to self dx-ers, but my society will deal with referrals from autistic centres so obviously the majority will be 'official' Aspies/auties. However I have no problem with those who choose to self-dx coming along - although in the UK at least I'd be trying to encourage people to go to their GP to discuss it, if nothing else. Thats not my pushing someone into getting a piece of paper to tell them what they know, but because universities can't really support students who aren't diagnosed with conditions that impact on their studies. At risk of sounding cruel, anyone could go to their disability dept and say they had anything and get the right to miss classes/get extensions if requested/private exam time etc. I'd push it to afford a student allowances that are available to them, if they need it. Even without a diagnosis, if someone presents with AS characteristics, sometimes the advice is relevant to them in how to deal with things.

For example some of the ways to combat depression can help someone with AS who is feeling low (i.e doing things you enjoy, have an interest in, sometimes exercise). Someone with terrible shyness or some form of agraphobia may take some solace in advice given to an Aspie with regards to social anxiety (They're not good examples but my head is kinda lodged up my backside right now.). My point is that even if someone said "I have AS" and then was told by clinicians that they didn't, the characteristics they present with that are similar to AS could get the appropriate advice relevant to someone who does have AS. If that individual had not tapped into support networks designed for Aspies, it could very well be likely that they would just stumble around seeking solace in other areas. Therefore, I don't have a problem with self-dx as support is support, and if you need it, and you can get support that pertains to you... good on you.

Thats awful Mercury, my uni sat down with me and asked me what I needed help with when I just was registered as having depression. I get copies of lecture notes/slides when I can't face going in, don't get penalised if I miss tutorials (provided I do the work and don't take the piss), I can get extensions (if required) for my coursework, and I have the right to sit my exam in a different room owing to social anxiety. I could get other things too but they were the ones that stand out most vividly.

I haven't taken up all their offers because I'd feel a bit guilty - I took the right to extensions and copies of lecture notes/slides and left it at that.

"These include directly teaching how to use toys and objects imaginitively through lots of practice playing, introducing appropriate activities to replace inappropriate behaviors by giving the child the means to have power over their own life and their environment (i.e PECS communication & schedules instead of trantrums), developing visual cues (such as hand signals or pictures) to reduce verbal and physical prompting, scheduling sensory activities proactively, and finding ways to make tasks more meaningful and motivating to the child with autism. "

But...(and my apologies if I'm repeating things others may already have said about this)...if you're an aspie child, do you want to play 'imaginatively' if this is not your brain's normal way of playing?  Or find the same things as meaningful and motivating as the NT children do?  

Or is this potentially parents or professionals not able to accept that their child is different, validly different, in their way of interacting with the world?  Are they desperate to "normalise" them to this extent not because it benefits the child, but because they have a personal need for these children to behave normally?  If the child is harming themselves or making life unbearable for others , then yes, some form of strategy to help with that is of course right.  But if we're saying in effect "you're not playing the right way, you're not having the same values as your peers and that's wrong" to an autistic child, I worry that we're actually failing to value their different insights into the world around us?

I should point out that he's not really debating any more, just reiterating.

I wouldn't bother keeping the discussion going - it will just go round in circles.

Since admins have been brought into the discussion a few times, I thought I'd put on my official hat and try to clarify what I think the boundaries are on this topic - though I can't speak for Gareth & CouldBe, of course.

Basically, there's nothing wrong with just discussing the topic - I don't consider that to be offensive. This includes opinions about the accuracy of self-diagnosis (or professional diagnosis), the problems associated with it, etc.

Repeated generalised statements about the character of self-diagnosed or professional diagnosed people, on the other hand, I do consider to be crossing the line. This includes statements about either group being attention-seeking, self righteous, deluded, etc.

I should note that this only applies to generalising an entire group - if anyone wants to accuse a particular person of this behaviour, and relate it back to something they're actually doing in the forum, then be my guest.

I also consider repeated out-of-context references to another persons diagnostic method to be a form of bullying (e.g. Telling someone that their opinion is irrelevant because they are self-diagnosed, etc).


Note to Janet: None of the admins have an issue with self-diagnosis, from what I've seen. For myself, I've done both (self-diagnosed at 14, official at 15), and I still believe that the process I used for self-diagnosis was much more accurate than the official process - after all, I knew me better than they did.