Beliefs about autism/asperger's

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Here are my beliefs about autism:

Is autism a disability: High functioning autism and asperger's aren't disabilities. Merely variations. Low functioning autistics are disabled as their IQ is low and they usually won't ever be able to live successful lives.

Cure for autism: Autism cannot be "cured" and even if a "cure" was available I would rather die than accept it. There is no neurotypical John behind my AS. It is an integral part of my personality and without it there would be no me.

ABA: While this can help autistic people integrate into society a little easier, I believe it is wrong to "normalize" autistics.

Should there be a distinction between HFA and AS: I don't think there should be because although those with HFA have difficulties with speech at an early age, as they grow up, they mainly face the same difficulties ad those with AS.

Autism Speaks: Deceitful, pretentious, moneygrabbing scumbags. The only people they care about are families of low functioning autistic children. They really don't give a damn about high functioning autistics or aspies.

I'd love to hear other people's opinions on the same topics.

OK, you are starting out wrong on your very first two points. HFA & AS can be very disabling socially & otherwise. Especially if there are co-morbid conditions. I probably have High Functioning Classic autism but there are many dx'd Asperger's patients here who I would say are very disabled. And you can & will move up & down on the Spectrum as you age. Something almost no one seems to write about, except those writing their own auto-biographies. I wonder why there is never any follow up on Autistic Adults?
People with SEVERE Autism may or MAY NOT have IQ defecits. Its very hard to test someone who will not communicate with you. In fact, I know of one or two severe autistics who had IQs somewhere near 150! This is the old belief that Autism & Mental Retardation go hand in hand.
Be careful when you write things like this here..
Many will not be as diplomatic as I have tried to be here..
You may be in for some serious flames..

Sincerely,
Matthew

I'll bite...

IMO, Autism causes varying degrees of disability in people, but it causes some degree disability in all people who are diagnosable. Otherwise you'd be like me: a shadow. I am barely impaired, and therefore not eligible for a diagnosis and although some of my issues truly are deficits, I'd be hard pressed to say I am disabled by any of them. Well...perhaps my grave disorganization, but I have learned to compensate for that for the most part.

IMO, some "forms" of "autism" may be amenable to being cured. But I do not think that those things are the same things that run in my family. I do believe that environmental insult and toxicity can perhaps create autism-like symptoms in susceptible people. So, if caught early enough I suppose it could be reversed. But if you are talking about the born-this-way neurodifference kind of autism, I don't think there is anything to be cured of; therefore, no cure.

IMO, ABA--while I get the criticisms and do believe that it can be harmfully applied by either ignorant people or sadists--was a godsend for my daughter. It opened doors for her communication-wise and socially that perhaps may never have opened otherwise. Who knows? Despite people's insistence on how evil it is, my daughter was never forced to make eye contact, was never forced to the point of meltdown or tears, looked forward to each and every session she had, and still asks for her therapist 3 years later. They loved each other. Truly. Her therapist really got her. And was able to bring out the best in her in a way that was beautiful and amazing.

IMO, HFA and AS seem an awful lot alike the older a person gets. I'm not sure if the distinction is useful except to point out that someone had delayed speech. My son had advanced speech at an early age and my daughter was delayed. My daughter is about to turn 7 and her speech is about where her brother's was at that age. She may have started late, but she leaped ahead once she figured it out, so how is distinguishing her as someone who was initially delayed helpful? What I find a more fascinating distinction is between those who have delayed fine and/or gross motor skills and those who have advanced fine and/or gross motor skills. Those seem like distinctions that exist well into adulthood and are probably more meaningful in terms of support needs. Yet those issues are classified in a singular manner. Doesn't make sense to me.

IMO, Autism Speaks has a shady history and I think no matter what they do, some people will never give them a fair break. I--personally--am not a fan. I am appalled by their financial dealings, up to and including the ridiculously expensive place they choose to have their headquarters. I am not fond of their fear-mongering publicity stunts. I am skeptical about what they would actually advocate if there ever does come a way to determine in utero. But I don't believe everyone involved in Autism Speaks is evil, nor do I think everyone who supports them is. I have met lots of parents with kids on the spectrum who simply do not buy into neurodiversity. But that does not mean they don't love their kids, even though I recognize that is a popular belief among some autistics. I also feel I have to respect that some adults on the spectrum would choose to be cured if they could. It's not fair to discount their experience, opinion, or beliefs just because they do not coincide with my own beliefs. I think the "warring" sides hurt everyone. And I think that people with strong beliefs either way often do not see things objectively. Flame me if you must for saying that, but I have seen people on both extremes behave atrociously because they got so caught up in justifying their views and principles to the exclusion of someone else's experience that they appeared to lose the ability to reason.

Okay, AS is a disability. It makes me extremely socially anxious and it's utterly infuriating to watch NTs communicate so effortlesly. However, because of AS I'm very mature for my age, my vocabulary is very advanced, I'm very hardworking and unlike most teenage boys, I have retained the power of rational thought! I'm also immune to the severely disabling effects of neurotypical syndrome such as pretentiousness and conformism.

I have to agree, if there was a compulsory cure for autism, I would kill myself rather than take it. If I committed suicide, I would be gone forever but if I took the cure, my friends and family would have to watch some other guy strutting around in my body. Ask yourself, which would be more painful to live with?

I had ABA for a short period and my parents tell me it drastically improved my behaviour so, I guess it must be a good thing.

The distinction between AS and HFA may be importantant at a young age but as people grow older, all the distinction does is create unnecessary confusion.

"Autism Speaks: scamming the world and intimiding disabled people" would be an appropriate slogan for them. I'm absolutely astounded that people are stupid enough to fall for groups like Autism Speaks and CAN. There is no cure for autism and paying money to greedy, fascist organizations won't do anything to change that.

Last edited by Curiotical on 02 Aug 2012, 8:15 am, edited 1 time in total.

It depends what you mean by disability. A disability is:
dis·a·bil·i·ty/ˌdisəˈbilitē/
Noun:
A physical or mental condition that limits a person's movements, senses, or activities.

If someone gave me a benefits form or a survey or an application that asked, "are you disabled in any way?" I would answer "No", because I don't consider myself to be a disabled person, it doesn't stop me functioning day-to-day, and I can move and talk in the same way as other people. Being unable to move and talk normally is what most people consider a disability.
However, AS does effect my ability to communicate with people and take part in certain activities, so technically it could be considered a disability. I would call it a social disability, that CAN effect my daily functioning, though it usually doesn't.

There are different types of autism, you can function as a human being, possibly not the same as NT's but you do function, whereas somebody at the other end of the scale does not, I can imagine only a fraction of how frustrating it would be to have words to say and not be able to say them, to watch everything move around you and not be able to join in, where something as simple as communication has so little meaning to you. I think if you asked them if they wanted to take away their "disability" they would most definitely say yes.
Imagine being a Mother if you can, and never hearing your child say "I love you", having to restrain your child because they keep attacking you, even though they don't intend to, never being hugged or helped out in the kitchen or thanked. It must be so hard, and I can imagine why parents would want to "cure" their child, even if they accept them as they are. Even for the parents of children with AS, the hassle they go through, the torment of not being able to help or "fix" their child must be enormous. I don't think you can understand that until you're a parent.

Autistics are "normalised" to help them function in the world. How can they be helped or taken care of if they can't communicate to others that they need help? How can they care for themselves (if they're high functioning) if they're not taught to understand how other communicate? Saying autistic's shouldn't be taught to be like "NT's" is like saying a person who only speaks a foreign language should come and live in your country, and work in your local shop, but it would be wrong to expect them to speak your language.

I don't think there should be any distinction between different types of autism, I honestly believe the diagnosis should be "autism", and they should be rated on a set of scales, according to how it effects their communication and functioning. I went to a college for teens with AS/HFA, and there was a massive difference between the people, abilities differed massively in all areas, but they could all have been put of a few simple scales according to how well they functioned in different areas. What I mean by this is a scale for IQ, a scale for ability to communicate, a scale for verbal ability, a scale for ability to care for yourself etc. My AS is very different to other peoples, yet there is no distinction between myself and others in terms of diagnosis.

On the other hand AS does interfere with other people's daily lives and day to day activities so to them it is a disability. Its entirely reasonable for you to choose to answer that question the way you'd want to about yourself, but others can actually be disabled under that definition and given the AS diagnosis.

So, OP, no, I completely disagree with you when it comes to the idea of disability. I don't think every person with the Asperger's diagnosis is disabled. I do think that some of us are. I do think that I am disabled. I do think that other people's statements about their challenges do not change mine just because we share a diagnostic label.

I am not only different, I am not only impaired, I am drastically limited in day-to-day activities. At the moment we're working on figuring out how to make cooking work for me. Packing to move is something that's a huge challenge. Cleaning is something that I will never be able to do all of. Shopping is a problem. Going out in public at all is a problem. My vocational rehab assessment has declared me currently not employable - "not suitable for job placement at this time" is the language they used.

It isn't the same as having drastically limited speech, but it is solidly being disabled. What I can do is not the same as what others can do. How I do things is not the same as how others do things. There is a disability affecting all aspects of my life.

Well, I'm not sure.

It seems to me that depending on the severity and the specific symptoms, for some people Autism itself is the source of a lot of suffering while for others (like me) it's largely the fit between the person and her social environment that causes problems. Disability... well, again depending on individual symptoms, there are some things we can't do as well as NT's and other things we may do better as a result of our AS wiring, so it's not so much a disability as a different set of strengths and weaknesses. Yeah, I'm hedging a lot, because I believe it really varies from person to person and even from time to time in the same person's life, depending on lifestyle.

Cure:? I wouldn't know. I wouldn't be up for something that would change my brain to think like an NT, because, to be honest, I find their way of thinking repulsive and illogical. I might be up for a cure for the sensory issues that prevent me from touching certain types of paper or using pencils, or my difficulty tracking things like cars and people in crowds, but I don't know. I suppose something that would reduce the symptoms would be possible, but could require years of therapy with or without medication and might be more trouble than it's worth, and I'd hate to see such treatment forced on anyone.

I don't know enough about ABA to draw a conclusion.

I don't know enough about Autism Speaks, either. There are a couple of things I've heard that I didn't like: a connection with the guy who recently implied aspies are likely to become spree killers, and the case where the fired a woman for asking to work from home. Still, I wouldn't say I know enough to judge.

So: no belief, no belief, no belief, no belief. Hope that was helpful.

Just to clarify, I don't mean it should never be classed as a disability, but that for me that it's not bad enough to be classed as a disability. There are so many people with AS, and all of them have different abilities and strengths, I've met some people with AS that just wouldn't survive if they weren't cared for. Then again, I've met some like me, who are able to get married and have kids and live self-sufficiently without much support. So for some it is a disability, for some it isn't, for me specifically, I don't consider it to be, and nor would most of the people I know with AS. (I mean the people I know in person, not online)

Disability or not: Some individuals on the higher-functioning end of the spectrum are disabled, some aren't. I don't think I am.

Cure: I can understand why some would want to have a cure (for themselves or a child), but I personally wouldn't take it. I wouldn't kill myself instead either. If it was compulsory, I'd find a way to hide amongst the NT population better... That or go underground (literally).

Autism Speaks: Claims to represent those on the spectrum, yet refuse to allow us to speak at events or be employees. They claim that would be "inappropriate." They're probably afraid we'd speak the truth about the insideous organization and reveal just how little of the money obtained from their fundraisers (more like wallet buffets) actually goes to those the organization claims to represent.

Aspergers vs. Autism: I have seen many comments from those with autism that people with Asperger's are "fakers," perverts, deceitful, cunning and manipulative. These people also refer to aspies as conspirators in a scheme to discredit autism and should not be included in the definition of the autism spectrum, often defending Autism Speaks. There are similar remarks made by aspies as well. This Aspie vs. Aspie mentality is no different than the black vs. white, Nazi vs. Jew, Christian vs. Muslim and gay vs. straight problem. Divisionism is one of the most dangerous ideologies, for it's divisionism that breeds the thoughts of divine superiority that lays the foundations for the dehumanization process, thus creating a permissive environment for discrimination and genocide.

My beliefs:-

''Lack of empathy'' is not a specific Autistic/Aspie trait.

Autism is a disability.

There are shades of grey on the Autism spectrum, but there are also mild cases and severe cases.

Autism is not the only non-NT condition.

Almost every single person I've ever told I have Aspergers said they never really noticed anything. One person told me I seem absent minded sometimes, and that's absolutely true. The girl I was with when I found out didn't want to hear it and seemed to think I was making excuses. So apparently, assuming they were being honest with me - I can never really tell - for the rest of the world I don't really have a problem. I've sometimes got issues with people, but that happens to everyone I guess. I do well at school and at my job. I don't have a lot of friends though.

Point is, I was diagnosed about three years ago, but I've always known I was different somehow. Now that I know what it is, it's starting to make sense. And for myself, it's really obvious I have certain limits in what I can and cannot do. I've forced myself to talk to random strangers, go to parties and all that, but I never fit in. I used to think that if I'd put enough effort into something, I would figure it out, but - although I get smarter about some things and I'm not giving up - I'll never really get 'better'. For me, but this might change over time, this is a reason to be very hesitant about beginning a new relationship, looking for a better job or whatever.

So even though there are shades of gray, in some ways it's very much about how a person deals with it. If someone with a severe case finds something he or she loves and has a goal in his/her life, he might be better off than someone who never really finds his passion, has no purpose in his life, no confidence, etc. Long story short, I believe it is a disability, but it's very different for a lot of people. Don't know to many other Aspies though.

I don't believe people can be cured (at the moment anyway), I do believe people can learn to live with it. If there was a cure, I'd go for it.

Something I would like to ask Luther and Patchwork and others who insist that Asperger's syndrome and high-functioning autism aren't disabilities, is: why were you diagnosed with an ASD? What was the cause or reason to come to that diagnosis? This is very important.

I was depressed and suicidal and had been self-harming for a while. It was as a result of this that I was referred to a psych and diagnosed. Yes, it was most likely a result of living with AS and not knowing about it, but I think I could have avoided that had I been diagnosed earlier.

Before you accuse me of "insisting that Asperger's syndrome and high-functioning autism aren't disabilities" you should read my previous posts carefully. As I have already said, I don't think people with AS/HFA are NOT disabled, I simply don't think it always IS a disability.

I have met people with AS who most certainly are disabled, they are unable to function on a day-to-day basis without care and support, therefore for those specific people I would consider it to be a disability.

AS CAN be a disability. At a time in my life I was disabled because of AS and the affect it had on my mental health, but I no longer am. I don't think that I am disabled; I function, possibly not the same as NT's, but I do function, I care for my children and myself, and there are almost no activities I can't take part in because I have AS. I am uncomfortable in some situations, and unable to handle them as well as others, but I CAN do them, so no, I don't consider myself disabled.

While I can say I mostly agree with your opinions, Asperger's is a disability a lot of the time for a lot of people. You see, it depends how heavily you have it. I don't have all the symptoms of AS and I've learned to read expressions well and make eye contact. However, I get anxious during or leading up to social events. That is a serious drawback, as friends always want to hang out, but I simply don't want to and I get very anxious.

HFA and AS are not classified by hardships that each have to deal with. They are classified by symptoms. People with HFA are classified with HFA because of the language delay and trouble with speech.

I completely agree with you on the topic of Autism Speaks.

You do realize that there is no such thing as an "NT" way of thinking. Not all NTs are illogical and not all Aspies are logical. And sometimes people who are illogical are blissfully oblivious of the fact and fancy themselves among the logical. I've always found it curious when people who balk at being stereotyped seem to feel comfortable stereotyping others...that doesn't seem logical, rational, fair, or just to me. Not trying to pick a fight here. Just pointing something out.

I am going to go against the flow here. If there were a cure for Autism I would be one of the first in line. Its with some decades under my belt that I now realize what I have missed out on. In fact, I often feel like Marley's ghost in A Christmas Carol. Able to see, but not interact or change anything...
I cannot speak for Autism Speaks with any surety. (pardon that pun). I am not much aware of their activities. Or lack therof.

Sincerely,
Matthew