My view

I am a 19 year old female with Asperger's Syndrome. Research, in general, is a good thing. I'm not opposed to a cure, if the person wants it. Would I want it personally? No. But I do get offended when people act like I must be crazy because I don't want *insert random treatment*. It is a deeply personal decision. Nobody else can decide what I want. And it is EXTREMELY offensive when people say I am "afflicted", "diseased", or similar talk. Maybe there are Autistics who don't mind that wording, but me, personally, hate it. I feel there should be lots of research so we can sort out what actually helps and what is just potentially harmful or a waste of money.

Hi aspergerskitty, and welcome to IAN.

I think you are absolutely right that "there should be lots of research so we can sort out what actually helps and what is just potentially harmful or a waste of money." We still know too little about many of the treatments being used for individuals on the spectrum. That makes it difficult for anyone trying to make decisions about which treatments to try, if any.

When we begin to include adults with ASDs in the IAN Project --which should be soon!-- we hope to gather information that will help not only researchers, but policymakers and advocates. In the U.S., we don't even know how many adults with ASD there are, what their living situations are like, how they are managing in the community or the workplace, if they have health insurance or are able to get health care they need, if they are receiving any services, how much acceptance or prejudice they encounter, etc. Hopefully, having more information on these and many other issues will help us begin to understand the situation of adults with ASD in the U.S.

Over time, we plan to have a whole series of "Adult with ASD" questionnaires so we can cover many of these topics.

That sounds wonderful! I will certainly partcipate in those questionarres when they come up.

I just want to say that I don't want my son "cured". He is perfect just the way he is. I don't think he would be the same kid if he didn't have an ASD. I just want to take away his pain sometimes. He is 4 (just turned about a month ago) and he has a tactile sensory processing disorder and certain touch literally feels like needles all over his skin, so I just would take away the pain, but I would never "cure" him.

I am 'new' to the realisation of the existance of the kind of Research that You Guys are doing, and think that this Research is vital for helping People like Me being involvad in it. Ido hope You include in the Questionaires questions dealing with 'Females' having 'Aspergurs'who are rather 'Boyish' and 'Logical' in thier view of the world. Personally,I would like to see questions dealing with how many of Us Females Deal with Other Females who try to get us to 'coif'our hair,wear 'Makeup' questions concerning'bullying'and being cut fun of due to not wanting to do these frivilous things. I am quite shure that there are other 'Spockian' Females out there who would Benefit by such 'Womens'lifestyle/interest questions dealing with this and 'dress/clothing chioces,and other 'Female'issues' that We have to Deal with on a daily bases.I also cant waite for More information on How Adult females having Aspergurs,deal with 'Collage' Life, and 'Expectations'from other well-meaning Students, to 'Join sororities'and other such 'groups,as this is directly pertainant to Me.I have long ago left childhood,and wish I had known about You guys,much sooner than this.

Hi Treehugger. It is so interesting that you mention not being interested in fashion and make-up, as I have often heard this from women on the autism spectrum, as well as from some moms of children with ASD. I have wondered if this is another aspect of not being so focused, or in tune with, the "neurotypical" external social world and its expectations. I have also wondered if this is part of the "broad autism phenotype" (that is, autistic-y traits in family members who don't have ASD) in women.

Bullying is also a big concern of parents of children with ASD, and I hear many reports of having suffered it from adults with ASD. I hope that, at some point, we can do some kind of research focused on bullying. We are working on an article on that topic for IAN Community now.