Aspies For Freedom

I have been registered with the Autism Research Centre in the UK for a while and fill in the occasional questionnaire. I received the following email and responded.

My question is, how do we help research that could prove that we are not victims of the environment but rare genetic variants (like redheads ) WTHOUT providing the curebies with ammunition?


--- Autism Research Centre wrote:

Dear Tigger_the_Wing,

We are contacting you because you are registered on the Autism Research Centre volunteer database at (details provided)

We have been asked by our colleagues at the Institute of Psychiatry in London to pass on some information about a research project they are carrying out. There is a message at the bottom of this email and an information sheet attached. Your contact details are confidential and have not been passed to the research team in London.

If you would like to take part in the research, or you have any questions about the research project rather than replying to this message, please email
Dr Winnie_the_Pooh directly at
(Details provided)

Thank you for your time.
Best wishes,

Kanga_the_Roo
Deputy Director, Autism Research Centre


Dear Parent,

We are researchers at the Institute of Pyschiatry in London studying the brain basis of autistic spectrum disorders (ASD) and we are inviting twins with autism to take part in our new study.

We are devoted to identifying the different brain regions that might be involved in the separate areas of difficulty experienced by those with ASD, and what part genes or environment play in their development.

Our research involves using modern MRI brainscanners to take pictures of the brain, as well as asking people to complete some puzzles and tests.

We are inviting male pairs of identical and non-identical twins, aged 8 - 45 to take part, where at least one twin has been diagnosed with autism or Asperger's syndrome.  They must be able to speak English, and be willing and able to have an MRI scan.  There is a payment for taking part, and we cover travel costs.

We have attached some additional information about what is involved.  Please contact me by phone or email if you are interested in taking part or have further questions.  We would be extremely grateful for your help,

Yours,

Dr Winnie_the_Pooh at
(Details provided)

  
Dear Dr. Winnie_the_Pooh,

I have fourteen-year-old fraternal twin boys, one of whom has a diagnosis of Asperger's Syndrome. He also was CT brain-scanned twice as a baby at Hundred Acre Wood Hospital near the East Pole in Kent because he had hearing problems and a large head.

Unfortunately, although we are willing to participate and you kindly offer to pay travel expenses I seriously doubt that the funds would stretch to air fares from Adelaide, South Australia, where we are temporarily living (probably until 2011)

I am so sorry to disappoint and hope that you are successful in collecting enough research subjects, providing, of course, that you are not aiming either to cure or find a pre-natal diagnostic test as I, my husband and our children & grandchildren come from long lines of highly successful people on the Autism spectrum who are/were perfectly content not to be boringly 'normal' and would be most upset about any attempt to label us as defective. Different, yes, but not defective.

Yes, I appreciate that being slower to cotton on to social 'norms' can be considered a drawback, but only if we are met with prejudice - as is the case, of course, with immigrants from other cultures.

Best wishes,

Tigger.

Obviously, names have been changed!

When thinking of what Winnie_the_Pooh wrote, I come to think about someone who said that there have been numerous times where one twin was autistic and the other was not. I am not sure if he meant identical twins or what the diagnosis of the twins were.

... and don't call NT's boring. I know for a fact a rather interesting NT.

Sorry, I didn't realise what I was implying - I only meant that I would find it boring to be normal.

That really is the question though, isn't it? You can't be clear of people's motives... though I liked the bit you put in there about the prenatal tests.   And even if THEY didn't, whats to keep others to taking their info and using it to eradicate autistic babies from being born???

The "find the cause" effort is always a double-edged sword. It is driven by a desire to understand, but it also carries the agenda of elimination.

AS is simply a naturally occurring variation. IF it were not a socially demonized status, I would be less suspicious of the motives of the research. But as long as the social stigma is so broadly and actively perpetuated, some people will always use that research against the AS community.

Some people with set prejudices and ideas might look into the research and find the one in hundred lines that could be used to suggest their ideas.

Yes. The same way many people use the bible. But that's often powerful (and destructive) enough to sway public perception and influence the political process that decides what research will receive funding. In America, at least, the research and the programs that get preferred funding and grants are the ones that serve the anti-AS agenda.

In America, science is very politicized.

Tigger- have you ever thought of contacting Tony Atwood, since you're down under? He's very forward thinking when it comes to neuro-diversity.

I've thought about it, but I only 'passed through' Brisbane and didn't leave the airport!

As I am living over two thousand kilometres away, being on the same continent isn't much help.

(Sarah looks up the equivalent to 2000K to miles...)

1 242.74238 miles

Oh... that is a while. Seems like it would be somewhat easier... ha ha ha.

Funny, isn't it? Australia is just about as big as the US but everyone thinks that it is quite small because hardly anyone lives here.

The state where I live, South Australia (how's that for an imaginative name?) has a total population around one-and-a-half million, one million of whom live in the Capital city of Adelaide, but is one-and-a-half times as big as Texas.

That is true... I should say though that my problem had more to do with having no idea where you live and where Atwood lives as well as the basic geography of where those cities lie in relation to each other...



Hopefully South Australia doesn't have the same preoccupation with ignorance and stupidity that our Texas has...

oops, did I say that outloud?