Aspies For Freedom

What do people feel are the pros and cons of having or getting an official diagnosis?

Does it help to access services, and support in work and education, or are we at risk of facing more prejudice, being monitored, and even facing pressure not to have children?

There is a very good support service at my University so that it a pro.

A con would be that some people may 'label' you before they have even met you.  I don't tell people about my A.S until I know them well.  This way they get to know me for who I am, rather than what I am.

This has been my view.  Having a diagnosis potentially answers questions. You no longer have that inner voice saying "your lazy" or "your bad because you don't do what the others do."  A diagnosis is like getting a road map to a country you never quite understood before.

That said, it's not something you want everyone to know about.  Prejudices and misunderstanding abound.  Who you reveal your dx to needs to be a select few.

On another forum, there was some discussion about the woman who lived on the coast, just before Hurricane Katrina hit, who was refusing to be evacuated because she couldn't take her dog and, effectively, she'd rather stay at home on the coast and die with her dog.

Admittedly, I made some disparaging comments, I mean how mad is that?  She'd rather die?  It's just a dog!  She can buy a new one for gawd's sake!  I wouldn't think twice about having to be evacuated out of a danger zone without a pet dog or cat or whatever if that's what it took to save my life...

Anyway, my point is, this discussion got quite heated, with another guy having a real go at me, and I just explained that yeah, I like cats, but I don't get that level of over-attachment that some people have, that they would rather die than leave their pet, I explained I perhaps can't understand that attitude and behaviour because I'm Aspie and his response was to say, Oh, I'm sorry to hear that.   :?

Sorry?  Why would he be sorry?  It's not as if I told him I was dying of cancer or was suffering from some tragic affliction.  I tried just to explain in a logical way about why I thought differently to him, and then after that he made some other patronising and offensive comment that was a kind of put down, to the effect I couldn't contribute to the debate at all, he viewed my contributions in a totally different light (maybe in some way inferior? although he didn't say that, but it's kind of implied), because of what he now knew about me.  Shocking attitude.

I would think the main benefits (in the UK) would be getting a better chance of gaining access to social services, community mental health team suppport, special needs education, sheltered housing,  disability benefits, and  limited protection from disability discrimination in employment.

The NAS reckons there are about 500,000 people on the Spectrum in the UK, so it's clear that the government must be very selective in preventing so large a number of potential claimants from entering what it calls "the social needs market place." Diagnosis alone is not enough.

The real danger for Spectrum people in the future is not forced treatment, but getting any sort of treatment at all.   We will be forgotten to death.

English Lulu,

I am self-diagnosed AS.  And I also fully sympathize with someone who would not leave their pets behind in an evacuation.  I think I would probably do the same.

But then, my dogs are one of my special interests.  I spend many a pleasurable hour training, and just being with my two dogs.

They are a lot easier to understand than people, and they are far less critical.  They bring me much joy.

I can understand that FitzRoy. Dogs have kept me company through some times that would have been very bleak and lonely without them.

About the evacuating with your pet thing...

1. It's a rule and aspies are usually good about following rules and being honest about it. NT's might be good about BS'ing their way around this sort of thing but if you live in the Gulf area the message has been for years that you need to make plans for your pets. I never felt it was optional to do anything else. We simply use an online reservation service that deals solely in hotels that accept pets.
2. Pets can be much better companions than a lot of NT's. You'll need them in the days ahead and they need you.

About the pity thing...

I had this happen a couple of years ago with a private school we had shown interest in for my daughter. They called a year later to see if we wanted to reapply. I said that I wasn't sure because she had just been dx'd with asperger's and I wasn't sure how that affected the testing process(expecting that she would tell me to try anyway like one of the other schools had told me) and she instead said," Oh my God, I'm so sorry. I don't think we can give her what she needs." That was the last time I disclosed her DX during an admissions process.

Is a diagnosos a pro or a con? Today I'm very sceptical about the idea that telling one's peers that one has an autism diagnosis will make them more sympathetic. I went down to the school to pick up the kids, and I walked past the kindy and pre-primary playground where kids were playing. My ears pricked up when I heard a little girl mention the word "autistic". This year the school has admitted some kids with autism diagnoses to the early years classes to try to integrate them with the "normals". The next thing I heard was a group of dear little kids chanting in unison a nasty tease "Where are your pants stupid boy, where are your pants stupid boy etc etc". Yep, it was open season on all autistics in the kindy playground today! It reminds me of my own school days. These kids knew this kid was autistic, and that just gave the NT brats another insulting label to throw at the outsider kid; "Autistic!" Every playground has always had one or three outsider kids in it, but nowadays those kids have official labels; AS, ADHD etc. How does this help these kids?

I myself have never sought a diagnosis. In my own particular case I don't see AS as being a mental illness or a disability, so I certainly wouldn't want to get a diagnosis to gain access to services that are a part of the mental health or disability infrastructures, in fact I'd walk a country mile to avoid involvement with these kinds of services.

No way in the world do I need an official diagnosis to confirm what I have known for decades, even before I knew anything about autism; that I am a different kind of person to the vast majority of people, that the differences are to do with body language, level of interest in socializing, level of interest in details and scientific stuff, logical versus emotional thinking style, and length of attention span (mine long, theirs short). I have always known that our type are generally unpopular, but often aren't too concerned. I knew I shared "it" with my husband and we were thrilled to find that we had passed "it" onto our kids. Then one day finally, after years of seeking the answer, realized what "it" is, and I thought "Wow, people want to cure "it"?"

Why isn't there an organization called "Cure Sociopathy Now"? Why hasn't someone declared war on Antisocial Personality Disorder? Why is everyone getting worked up into a lather about autism, while ignoring the conditions that really cause huge costs and damage to society as a whole?

I have to concede that the schools where I live are starting to take the issue of school bullying seriously, as they should, but the bullies are not stigmatized as having some mental disorder, while autistic kids are. I believe the reason why they are not labelled while we are is that autistics are a minority, while almost every kid acts in a bullying way at least a few times in their life, so bullies are too "normal" to be given a label of abnormality, because they are really the majority not a minority.

I very much agree.

One reason may be that the curebies are parents and family members, and with sociopathy and NPD, and oher conditions, the parents don't want to be identified on walks and in the media through shame over the condition.

They may want to pretend it doesn't exist, or else shun the adult child.

I think the whole social contexts surrounding autism and the antisocial conditions are probably quite different. One can imagine some parents taking their child to a clinician, and being told in a sympathetic tone that their child "has autism", and then the parents are all shocked and tearful etc. But I can't imagine a similar scenario for an antisocial child. Who would be brave enough to tell parents that their kid is a psychopath? They could end up with no teeth!

And it often appears that the parents of antisocial people are just as lacking in conscience and responsibility as their kids. I think there are social and moral causes of antisocial types of conditions, and I point the finger at the parents. I have heard parents trying to defend their offspring when they are sent to jail or busted for stealing, but one doesn't often hear parents of autists defending their kid's right to do autistic stuff, even though it is much more harmless.

Are there warning signs that people can follow? I could really do with knowing what they are, can you list them?

That's because we are such a small minority that it's often easier just to move the kid to another school, etc., instead of fighting a public battle.  Especially if one wants to avoid having the kid labeled in the first place.  Parents quietly defend their kids by "voting with their feet," and it never gets into the news.

When I started school, my parents sent me to four different schools in two years before they found one that would let me do "autistic stuff" in mainstream classes.  I wasn't told what was going on, and for a long time I thought it was just a matter of trying different schools to find one that fit, like trying on clothing at a store.

Hurrah for AFF and the Internet... now we can be as loud as we want in defending our rights, without putting our kids at risk in real life.

Bonnie Ventura wrote

Our kids' school let one of our kids work on researching and writing up their special interest instead of classwork when this child was aged 6 or 7. The teacher probably didn't know that she was "indulging" a "pathological" autistic behaviour, as none of us are diagnosed, and back then I didn't even know about AS/autism, so the unsuspecting teacher wouldn't have known why our child was so obesssive and couldn't be made to think or talk about much else except that subject.  :lol: A fine example of integrating an autistic child into the government school system, and she didn't even know that she was doing it! :lol:

Another quote

I'll defend my kids' right to be treated correctly and fairly according to their needs, no matter how unusual or hard-to-explain those needs are, but it is a bit tricky doing that for kids who have no autism diagnosis because they are not fully autistic, but still have some strong autistic traits, as well as having parents who want to avoid the whole labelling thing.

For the last few years I have had to explain my kids' idiosyncrasies and needs (for a reasonably orderly and quiet classroom, some help with getting organized etc) to schools, and as the years go by the need to do this has not decreased any. Some adults in the family are of the strong opinion that we must not mention the word "autism" or Aspergers" as the general notion of autism they say is of a helpless and intellectually disabled person with a saliva problem. :mad: So I'm left with the task of trying to clearly, fully and convincingly explain what is different about each of our kids, while I can't mention what these conditions that the kids have are called. I have to convince people that my child really does have something, but I have to avoid mentioning any names or labels for the conditions, and I guess the reader or listener will be thinking "Gee if this weird behaviour/sensitivity is a genuine condition that isn't psychological or caused by indulging the kid, why haven't I ever heard of it before? Why doesn't it have a name, like ADHD or Dyslexia? I this woman making this stuff up? :roll: