I know you know my thoughts on this and so you know I speak as someone discovering self later in life, I found Aspergers which is just one of my neurological differences, I have as many weaknesses as strengths and see my self as differently able and to me its not about being diagnosed or the label so much as being able to understand self and coming to understand my symptoms, differences.

First I would like to say I know many people diagnosed with ASD like myself later in life and none of them have regards, all only wish they had know sooner, as without knowing certain things that may not work in our lives, hard to change, hard to know how your actions impact upon others and often those closest to you. I have to ask does any professional have a right to keep life changing information from anyone. As not knowing well for me causecd so much damage, it was truly like living in the shawdows, I never quite fitted, never understood fully self and up until I was diagnoed never had the confidance to truly be…

I also feel if I hadn’t discovered Aspergers I would be continuing my life on an almost self distract button, no real sense of being or purpose. One of the most amazing things on my journey has been for the first time in my life I have found so many others like myself, who understand and I can relate to and no longer need to feel sub human. To not know to me would be like being imprisoned for the rest of my life, that invisible cage does exists… so if did not discover asd it would of been like with every step forward, the invisible cage would continue to hold me back… I guess its the difference from just existing or really existing. Young children may know no difference when very young but hurting them is wrong, has long term effects, the same I feel is to not diagnosing ASD adults or anyone on the autism spectrum, the longer ASD individuals continue to be in the dark about real self the more damage and harm long term I feel is inevitable.

I am not an expert and do not pretend to be, I can only tell my story and that is one of many… life is a choice for all of us, ASD was one of my better choices, discoveries in life. All I know I do not cry for no reason any more, there is no longer a deep sadden that just didn’t make sense, I no longer need to pretend I just am. But as for all of us what would any of our lives be like if we did not search, did not seek to find answers.

Being diagnosed with AS it was a HUGE relief, everything starting making made sense! And not only did it make sense, I was able to start dealing with things I never understood, or realized about myself before. To me no one has the right to keep someone else’s life on hold! Discrimination yes its very real and can be incredibly damaging, so its important more of us speak out and raise awareness and let others know its ok to be differently able, a diagnosis has to be an individuals choice, but they should at least have that choice.

Bart I agree “Autism is clearly a multigenic trait” and like the universe no real answers, but does there have to be!

Aspergers Paralllel Planet – http://www.asplanet.info

Your first point I agree with entirely, discrimination is real and incredibly damaging. At the moment the only way to avoid discrimination is to “hide”. I have hope that as we mature culturally we become more tolerant and accepting. Things do seem to improve, albeit slowly and never fast enough for the children of today. As I’ve grown older I’ve seen tremendous change for the good in the way we, as a society, deal with or help people who struggle (for any reason) with the world we have created.

Is it reasonable to ask people today to choose to be open in the hope that society will treat them with care and respect? That would seem to me to be a personal choice for the individual. I can’t protect them from casual discrimination, I can’t even be sure I won’t do the wrong thing myself. I do think though that society can’t learn, and nor can I learn how best to help without open honest contact.

We do have people working really hard to figure out how to allow people with brains that aren’t average to integrate or perhaps even excel in society. At some point surely the help the society can give should outweigh the harm that discrimination can do?

Regarding genetics I disagree. Genetics has revealed some amazingly complex systems. But the people working on understanding those systems are also pretty amazing. I don’t for a second expect to see an “autism gene”. But I also don’t believe that the regulation of the development that results sometimes in autism is beyond our ability to understand. We will be surprised and we will discover yet more regulation of development. But I really do think in 10 years we’ll be able to name the most important genes involved in autism and not all but most people on the autism spectrum will show some variation in those genes.
Autism is clearly a multigenic trait and as a result will be complex and hard to diagnose accurately. But even with the tools available today we can unravel really complex biological systems. There is a difference between complex and impossible and I guess I have seen enough impossibly complex systems unravelled to believe autism will be too.

I think you’re also right that it’s incredibly important to treat the phenotype, especially at the moment when we don’t understand the mechanism. Genetics hasn’t really reached clinicians yet at all. And as for how it will help practically, that will need huge effort from both clinicians and the scientists. But it will help, because both the clinicians and the scientists want to help the patients, why else would they work that hard?

My work? I study the regulation of branch outgrowth in plants. Trying to answer a question you probably have never asked, which is why do plants produce branches when and where they do? We use all sorts of tools, including genetics and molecular biology. It’s good interesting science and I think even economically valuable.

Part of the interest is scientific, human genetics is really interesting and the methods scientists are using to uncover relationships between genes and phenotype (be it a disease or another trait) are important in my own work. But a part of the interest comes from knowing of Russell Brown’s family. Which creates a personal interest.

For me as a scientist the expectation is that diagnosis of AS will in the end be pretty straightforward from a genetic sense. And immensely complex from a personal sense. It will be easy at some point in the next 10-20 years to give a probability that a child will have some degree of autism, even perhaps possible to differentiate between kinds of behaviour that are likely. However what that statistical statement will mean for the person that child grows up to be and what that will mean for the parents and siblings is unclear.

I can understand why being labelled with a diagnosis may not be helpful. The very label can change the way the person behaves and more importantly how they are treated. But equally foreknowledge of likely difficulties, for example in school, may make the whole school experience easier for the individual involved.

It seems to me that it will take a great deal of care on the part of clinicians to get the balance right and to make sure each patient is assessed as an individual. It does not seem to me to be an easy task.

For adults who have already adapted to their own strengths and weaknesses, I just don’t know if an after-the-fact diagnosis means much.