Hi all, my name is Hayley and I am hoping some of you may be interested in helping me. I am in my third year of university studying journalism and am preparing for my final project. As the sister of a 10-year-old with autism, I am interested in how being diagnosed with autism, anywhere on the spectrum, affects people in different ways in their daily lives.
I have to come to notice that autism seems to be much more closely associated with children than it is adults - but seeing as it is incurable, there are obviously adults out there, who I feel - and please correct me if you disagree, are not getting the help or attention that they need to be able to operate normally in society.
For my project I'd really like to get in touch with some adults with autism, their carers and their families, and speak to you about what life is like, what you feel needs to be done to make it better and easier. Being an adult with autism must be a whole different ball game to being a child, when things such as work, relationships, and living alone come into play.

Please get in touch, it'll be a great help to me but also hopefully we'll be able to make a difference.

Thank-you,

Hayley Clark

Autism is not a disease. So there can be no "cure".

You may have needed permission to post your project here.

I am a 60 year old Aspie. We arent forgotten, we are just not noticed, because there is no money to be made off of us. IMO

This post was last modified: 02-08-2011 07:33 PM by skyblue1 .

You should get permission from an admin before posting details about a study. I can't find the actual rule that states this, but the principle is enforced. I suggest PMing Gareth and asking for his permission.

Sorry I was not aware that those were the rules - I haven't meant to cause any offence or break any rules.

Please ignore this thread.

Kind regards,

Hayley

Here is the thread, and it is stickied.

http://www.aspiesforfreedom.com/showthre...?tid=19114

It is a simple matter to ask. An admin may see this later and give defacto permission.

Even though I'm a mod, I would suggest rewording your questions to make us want to help you with your study.

I like the way that that post is phrased. It's straightforward and gives me an idea of what this study will involve. It also indicates what Hayley's opinions of the subject matter are.

And even though she is a sibling, is not very familiar with the subject.

Fair enough

Well, I only realized I had Asperger syndrome when I was 23 or so.  Before then I just assumed I was a bit quirky compared to others, and just didn't have much common sense.

Since finding out though, I am able to identify my shortcomings, such as social skills, and adapt to either strengthen or circumvent those weaknesses.  It's a lot easier to know how to adapt to your shortcomings when you know what they are and what causes them, rather than just sitting around wondering what's wrong with you.

you got permission (just get the other half from Pika or Gareth for them to approve)

Very astute of you to put the facts together to realize that such a problem must exist.  There is so little out there for adults!  If one wants services or a DX, it is often necessary to see a pediatric therapist or clinician.  The problem with that is that AS and autism are different in adults.  Adults have different struggles.  Instead of handwriting and functioning in a classroom, we're concerned with things like underemployment and forming lasting friendships.  Plus parental report, which is often used in DX, is not as accurate 20+ years later.  There are different DX criteria for adults with AS (I think its called the AAA rating scale?), but clinicians are seldom familiar with them.  Adults are often misdiagnosed, particularly women.  

I hope you do pursue this topic.  I would strongly encourage you to check out ASAN's website.  There are autism conferences in the U.S. frequently, you may want to take advantage of one of these for further information as well.  Check out Temple Grandin's website, she has information on conferences there.

As are a majority of people with autism/asperger, the doctor, the familly and especially the media.

You shouldn't tell off someone who want to interview you, who just happen to want to be journalist. This person giving you a chance to talk. Take it before it pass. These occasion are rare. Kinda dumb to refuse it, while at the same time *** about not being heard/wrongfully portrayed etc.

Thanks for your help - just so you know I have since got permission from Gareth since initially posting on here.

Yes - I have done some research and came across the the pamphlet 'I Exist: The message from adults with autism' and found that my thoughts - that autism is so closely associated with children (which as I said earlier is obviously important for many reasons) were accurate. Seeing as autism is a relatively new syndrome diagnosis wise, there are many adults who didn't get the nurturing children now receive in schools, so perhaps did not get the right preparation for life as an adult with autism. For example figures show that only 15% are in full time work...I want my article to portray the lives of adults with autism, to get across what you feel should be done to help etc.

The problem with the way that autism is portrayed in the media is that it is often from the point of view of doctors - not from those who actually have the syndrome. Personally, I have never read an article where the main source is someone with autism - this is my aim, to speak to adults with autism and get your views on the way life is for you, a typical day routine. Do you get the help you need? What help would you like to receive if any?

95% of adults on the specturm have no DX.........those that are disabled enough in america, probably already recieve welfare benefits.


My problem is the medical professionals. In that I feel THEY should be studying adults to see how they may better serve the children.

Other than our comorbids there is nothing much they can do for us. As I said there is no money in helping adults with ASD. So they treat us for our depression for example, but little else. It is already too "late" for most adults. Our personalities are already formed. WE cost them money they dont make money.


only my opinion.