Good news- Spectrum 10k study has been postponed

Because such studies can be done, they will be done. This being acknowledged, the question for autism advocacy groups and the autistic community is, 'who do you want to do the research?' Personally, I would rather it be done by relatively unbiased academics in a country which enforces ethical standards, than by a commercial enterprise, an autism hostile entity (such as Autism Speaks), or in a country with an appalling human rights record, like China.

I would rather it be done with full, advance consultation and involvement with autistic people and preferably led by autistic researchers who genuinely have our interests at heart.  I'd also prefer it to look at areas of immediate concern and help to autistic people, rather than give yet more focus to identifying genes (as if they're going to be able to pare it down to just a few genes anyway). 

Plus, for me at least, it's more about each of our personal decisions about whether to be involved or not and ensuring that these decisions are as well informed as possible.  Clearly I'm not sending them my DNA nor that of any family members but I accept that others might look at the arguments and counter arguments and  come to a different conclusion.     

I would rather it be done with full, advance consultation and involvement with autistic people and preferably led by autistic researchers who genuinely have our interests at heart.  I'd also prefer it to look at areas of immediate concern and help to autistic people, rather than give yet more focus to identifying genes (as if they're going to be able to pare it down to just a few genes anyway). 

Plus, for me at least, it's more about each of our personal decisions about whether to be involved or not and ensuring that these decisions are as well informed as possible.  Clearly I'm not sending them my DNA nor that of any family members but I accept that others might look at the arguments and counter arguments and  come to a different conclusion.     

I would certainly hope so as I think change is needed.  (And TW for suicide reference).

*

*

*

*

*

 I'm late diagnosed myself and, whilst I probably appeared to be moderately successful, the cumulative damage to my mental health, often hidden behind closed doors, really took its toll.  I also took a lot of blame for issues which, had I been identified, would have been clearly covered by disability discrimination legislation.  And I'm still left with nightmares about some of my former workplaces. 

One of my (unidentified but very probably autistic) cousins took his own life, after years of appearing to be very successful.  On the face of it, nobody could understand why he drank that weedkiller when things were apparently going so well.  And now I think it can be pieced together.  So it all really matters to me.

Overall, there are millions being spent on research like this while people's basic needs aren't being met.  And yes, some research is "pure" and some applied, and only history will tell which has been more crucial, but either way, consultation and inclusion are very much needed as far  as possible plus, where big money is being spent, it seems a good idea to consider the here and now needs of the studied group and prioritise in the light of those.

There is a difference. Very few parents would abort based on a predisposition. Genetics is such a big factor autism that in theory you could have a test that might say ‘ok your kid is 90% probably going to be autistic “

of course that would require screening of many different genes an a complex algorithm to analyse the results but this sort of study would provide the raw data to make those algorithms.

I don't think research gets done for the sake of it (ie curiosity) as there are always financial costs involved

I think we would learn a lot if there were studies with brain scans and looking at how our brain processes the world in comparison with those who are not diagnosed autistic. I'd find that really interesting.

I mean maybe this study is just motivated by scientific curiosity- I have to say I would be curious to see the results- it could maybe also teach us about brain development in general- but then again I guess there is the issue with what can be done with the results, but I agree with Martin that eugenics is not really a viable threat- and isn't any information harmful in the wrong hands?. I'm not so good at thinking about those issues though so maybe I am missing something- I tend to just get caught up in the science itself and by a desire to understand. 

Some research on medical matters is done to investigate basic biology, with little or no application to therapy. I have done both basic biology research - such as on mechanisms of cell division - on pathogens and more directly medically applicable work on drug resistance and drug design.

I don't think that autistic scientists actively avoid research into autism, but the training and experience pathways of psychology and molecular biology have only a small overlap. In the same way that ancient DNA is a small (but expanding) field, as not many archaeologists are trained in molecular biology and not many molecular biologists are trained in archaeology. Plus autistic people who have successful careers in science have tended not to be diagnosed early, or at all. By the time I realised I was autistic I had retired. For me to have made autism my research subject it would have had to have been drawn to my attention as an undergraduate at the latest. With earlier diagnosis for less obvious autistics becoming more common, this may improve in the future.

This does, however, lead to me to reflect that some additional, qualitative research into the reasons why autistic researchers avoid this line of research might be illuminating. 

I'd tend to agree but still wonder where they'd then be going with it and how it might help. 

It's already known that it runs in families and is largely genetic.  What I'd like to see, spinning out of this, is more focus on the familial and inter-generational aspects, with more support for families when one of their number is identified,  not a medicalised approach for which there are massive waiting lists then a system which requires other family members to go to the back of the same waiting list to learn more about their own identities.
   
I'd also like to see much more detail fully addressing the concerns raised, especially when it comes to sharing genetic information, even anonymised.  

Martin said:

I think most genetic causal factors for autism are so entirely embedded in the general gene pool that eugenics approaches to eliminate it are not a viable threat

That's what I had considered as well

Its primary purpose is not therapeutic, it is to look at the genetic basis of autism. There is a definite genetic aspect to autism and it is a valid avenue of enquiry. The genetic basis of many aspects of human life are being investigated, from predisposition to various diseases to addictive genotypes. I think most genetic causal factors for autism are so entirely embedded in the general gene pool that eugenics approaches to eliminate it are not a viable threat. Any more than aborting foetuses with predispositions to alcoholism or asthma would be.

You are very welcome. 

Jenny Butterfly said:

I would particularly welcome more research into trauma and believe this would probably  also at least touch on mental health and suicide too.  If they could zoom in on masking, burnout and minority stress too, that'd be great (although I think that Monique Botha, Amy Pearson and Kieran Rose are already doing great research in these areas). 

I think a lot of other autistics including myself would agree with you about these research areas. All the researchers you mention do brilliant work.  Kieran Rose has said before non autistic researchers have a simplified and inaccurate understanding of masking.

Jenny Butterfly said:

I'd also like to see more focus on education, workplace inclusion, later life and the positives of being autistic, which are so often completely overlooked but, as has been mentioned before, might be closely if not inextricably linked to some of the weaker areas. 

Great ideas that would actually directly benefit our community. I think there should be research on the impact of a positive autistic identity for mental health and the importance of identification either late or early for mental health. By understanding positives of being autistic, researchers can better understand how to approach and manage mental health concerns for our community and how to recover from experiences like autistic burnout.

Hi, AA.

Thank you very much for the information - I was completely unaware of Spectrum 10k until I read your posts. Thanks again.

Yes I think the pool of autistic researchers in that field is very small. An autistic friend of mine is a developmental neurobiologist and his lab also has some projects on autism but he doesn’t really want to get involved in those and I can understand. I am a developmental neurobiologist myself (and also) and I personally would not feel comfortable going into autism research...

Yes exactly the need for DNA is one of the main and numerous concerns about the study.

Exactly.  I'm suspicious of their motives.  I did at one time believe that some kind of genetic test might have helped families like mine to quickly identify that they're autistic at an early stage, before trauma began to accumulate in life and to improve awareness of options and supports, if needed.  But that  could be covered right now if services (including health visitors, medical staff and educators) were simply better informed and willing to adapt and make adjustments.

I would particularly welcome more research into trauma and believe this would probably  also at least touch on mental health and suicide too.  If they could zoom in on masking, burnout and minority stress too, that'd be great (although I think that Monique Botha, Amy Pearson and Kieran Rose are already doing great research in these areas). 

I'd also like to see more focus on education, workplace inclusion, later life and the positives of being autistic, which are so often completely overlooked but, as has been mentioned before, might be closely if not inextricably linked to some of the weaker areas. 

Some emphasis on families, especially inter- generational trauma and family dynamics would also be very useful, I think.     

If it's about improving autistic well being then why do they need dna?

It might not be but I would favour their contribution first and foremost and, failing that, there should be more emphasis on consultation and inclusion - upfront and not merely as a sop after there's been a negative response.

There's also the question as to why the research focus and money should be in the area of genetics.  If that's where the majority of autistic people would like to see more research then fair enough, but I suspect it isn't.  

Jenny Butterfly said:

I would rather it be done with full, advance consultation and involvement with autistic people and preferably led by autistic researchers who genuinely have our interests at heart. 

Yes, but we are talking about a scientific - genetics/molecular biology - study and not a sociological study. I don't think that the pool of autistic researchers in relevant disciplines is all that large.