"Real autistics" versus Aspies and HFA

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I had hoped that JER's article would be a bit more in-depth on how autistic people can work with researchers.
I think that it would have helped if he outline some concrete ways of doing this that people can imagine themselves doing.
I am wondering what things autistic people specifically want researchers to know and apply.

I don't think parents or "high functioning" autistics can speak for the entire spectrum. On the boards of organizations and government advisory boards like IACC, we should have parents and autistics from across the spectrum including non-verbal self-injuring ones.

Asperger's and high functioning autism is not "real autism"? Sorry but science disagrees with you. Asperger's is autism, it's just milder than severe or low functioning autism. Autism is a spectrum condition.

This.

Most parents of LFA children have no interest in joining Aspergers groups. What's the point? We are too busy trying to look after our children and scrape together money to pay bills to worry about other people's problems.


Actually it was the medical establishment that made that decision to amalgamate Aspergers under the ASD umnbrella based largely on evidence based research. I suggest (unless you are trolling) you educate yourself rather than relying on your personal fantasies based largely on severe attribution errors.

On the flipside there is an accusation that parents of LFA children are over represented in autistic advocacy groups. This is understandable as their funds are tied up in medical or institutional expenses and they are a little more desperate to lobby for government assistance (owing to the fear of bankruptcy) than the average parent of an Aspie child.

Overall it's also not reasonable that high functioning children are also deprived of assistance either. My own child falls in between these two arbitrary designations of LFA and HFA. The changes in DSM has had no impact on the assistance she receives at school.

People seem to caught up with these labels more because of they view labels through their personal prism rather than in the context of viewing real people with real needs. Both parents and their children.

I sympathize as long as it isn't too aggressive. In some ways, it's a semantical argument. He clearly went a bit overboard. Admittedly, I feel guilt sometimes because I'm nothing like the people with severe impediments. The spectrum is just so broad. Even some of you guys who are able to make your way through this world without much struggle can seem very strange to me.

I think that it is too hard for a person or group to advocate for people with all forms of autism.
The spectrum is too diverse, and one can't speak for someone else who is too different from oneself.

This doesn't make any sense. How does including more people in a diagnosis make them go away?

Sometimes this topic makes me feel guilty because I am not as severely affected as others. But any help I might receive, which is very little, is in proportion to what people think I need. I wish I had had more help growing up because people did have a clue how torturous life was for me as a kid. But now that my condition has been recognized, the little help that I am able to receive through Special Olympics and OVR is really improving the quality of my life.

People who are more severely affected need much more help and they should be able to get whatever they need as well. But even those who are not as severely affected sometimes need help and they should be able to get it in proportion to what they need. No one should have to be judged because of what he needs. If he needs help than he should be able to get it, whatever that might mean, whether it is a little or a lot. And neither end of the spectrum should have a sense of entitlement. We are all human, we are all needing something and we should be grateful for what we are able to get help with and we should do our best to help others whenever we can. But there is no reason to try to make one side feel bad or guilty or feel like they "owe" the other side.

I think each person has to be seen as an individual whether on the Spectrum or not and if that person needs help, whatever it is, than efforts should be made by as many as are able and willing to give him or her that help. I think we should stop looking at each other as this group or that group. We are all individual people and that is how we should view one another.

^
This.

I think that some parents of severely autistic kids see people like me and are probably upset because they believe their child is never going to be as functional as I am and they probably think "what right does she have to call herself disabled?".

Thing is, they don't get to define me just as I don't get to define them and their children. I didn't ask to be an aspie and I didn't ask to offend people because of my very existence. I can only speak from my own experience and I deserve that as much as parents deserve to be validated and supported.

I also don't appreciate the implication that "real" autistics don't ever advocate for themselves.

Calling it "milder" may well be misleading, even incorrect.
In some cases symptoms can appear "mild" because someone is putting a huge amount of effort into doing things which NTs often appear able to do unconciously.

I also think that it might be helpful to them to understand that we did not make up the diagnosis. We did not create the definition of the Spectrum. And we did not put ourselves on it just to give them a hard time. It just is what it is. It's just a label. How you care for your child and what your child needs will be the same no matter what the DSM wants to call me. I did not call myself that.

One of my relatives has partial paralysis and is legally blind but he still manages to have a relatively full and wonderful life and he does the best he can to make the most of it. He can walk and eat and do chores and keep up his own personal hygiene. He is very slow and has difficulty and limitations and sometimes he needs help but he can do many of the things that he enjoys.

Now there are other people who are fully blind and completely paralyzed and in need of constant 100% care for every single thing that they need. They are not capable of doing anything at all unless it is done for them. So is it right for the caregivers of those people to be angry at my relative and say that he has no right to associate himself with blindness and paralysis just because he is less affected than they are? That would not make any sense at all. His paralysis and level of blindness affects him tremendously and compared to someone who does not have that at all, he is quite disabled. But compared to a totally blind person in a vegetative state, he is very high functioning. But to be angry and tell him that he should not be allowed to be on the same spectrum of issues as the other person just because his case is more mild is absurd.

This is so true.

I think it is important to not let one person's struggle affect how we view another person's struggle. That is not fair. Each person should be seen as just that person and not have to be compared to others. We should not make value judgements based on what we think someone else might be going through compared to what we or someone we love is going through. I often like to remind myself that each person's challenge or struggle is just as challenging to him or her as mine is to me. So rather than looking at that person and saying he or she struggles more or less than I do, I would like to just be the kind of person who can look at someone and say, "How can I be respectful towards this person and if he needs help and I am able to give it, can I become willing to give it?"

My daughter's best friend at school over the last year is an Aspie girl. Speaking for myself I don't particularly care she is higher functioning and neither does my daughter.There is no sense of jealousy or envy whatsoever. I've also got to know the parents and we all cool.