Where should Autism research focus in the future? What is missing from the discussion?

[FlowerChild]

Hi everyone,

I've been a part of this website for a while now - I am an Autistic woman in my late-20's, and am considering which topic to research for my PhD in Social Sciences (i.e. Sociology and Diversity Studies).

I think I'd like to bring a new perspective to the field of Autism research, as it bothers me that most current research into Autism is designed and undertaken by Neurotypical people looking at Autism 'from the outside in'. I think that often times, the wrong questions are asked, and the emphasis is put more on teaching Autistic people assimilation tactics and finding a 'cure', rather than legitimately embracing neurodiversity. Instead, I would like to establish how Autistic people would like the field of Autism research to proceed in the future--where would we take it if we had the power to change things? I'd like to conduct participant interviews, as well as a survey to collect quantitative data (statistics). This post and your comments will NOT be included in my research findings - I am just trying to figure out how I can plan my project at this point in time. If you'd like to answer all, or even one question, it would be a big help! I'll gladly accept any suggestions

So, I'll try to keep this brief, but I'd like to ask you all:

1 ) If an Autistic person were to undertake research on Autism, would you be more likely to participate in either an interview or statistical questionnaire, than you would be if the researcher were neurotypical? Why or why not?

2) What kinds of questions would you want to be asked or not asked?

3) What issues and topics do you think would be very important to cover, that Autism research and/or organisations currently tend to overlook?

4) If you don't mind, it would be great if you could answer the above poll, so I can work on my wording. If you have any labelling suggestions that aren't listed, feel free to suggest them in the comments!

At this stage, I'm still in the very early developmental phases (i.e. trying to establish a topic and research proposal) so I'd like to gauge how the autistic community feels about this before I go too far down a particular path. Thank you all for taking the time to add your thoughts!

 

[pjcnet]

1. Yes, because only autistic people truly understand autism, they're also more likely to be sympathetic to the needs of autistic people. Far too many NTs seem to think they know all about autism and even what autistic people need or want, but often they're very badly misinformed. Despite this it's virtually all NTs that head autism research, this needs to change. Similarly the best drug councillors are ex addicts themselves because only they know what it's truly like, it's the same with autistic people being involved in autism research.

2. Some questions that NTs would never usually ask and often assume wrong, E.g. if there was an easy cure available to become NT, would you take it? From a previous poll here the vast majority of autistic people don't want a cure and yet NTs still search for one, instead more autistic people need coping strategies for unwanted traits. Could ask various questions about how well we are coping with life. Could ask about special interests and in some cases whether it's being used to it's full potential. Some questions could also be added related to the answers below (3).

3. How many autistic people are receiving the right support or have access to it if they want it? I suspect not many. If they are getting support how do they actually rate it? Ask what support the person feels they need or would like? How many are being taken advantage of and/or abused? I suspect a lot and not enough is being done to stop it. Are some autistic people being punished for being autistic or misunderstood and is the criminal justice system treating them fairly? The level of care in homes for people on the low functioning part of the spectrum should be investigated, only recently some care homes in the UK have been reported for shocking abuse and I suspect it's a lot more wide spread, even where there isn't direct abuse, the level of care is almost certainly a lot lower than to be desired in many homes. In fact autistic people on the lower part of the autistic spectrum aren't usually able to directly take part in questionnaires, they need other people to be their voice, perhaps you could speak up on their behalf. Explore the association of autism and mental health, far too many autistic people are being classed as mentally ill and are even being placed amongst NTs with mental illnesses which is in my opinion totally incompatible and an often explosive combination. Explore whether autistic needs are being met with housing, E.g. if they're sensitive to noise are they put somewhere quiet, or if they're vulnerable are they put somewhere reasonable or somewhere where they're more likely to be abused? Explore whether autistic needs are being met at work. Could look into public funding and potential cuts on services and/or welfare benefits and how it is effecting autistic people, for instance, my parents are in their late 70s and are still caring for my 2 adult brothers who are on the very low functioning part of the autistic spectrum (they can't for instance count to 5 or do most things a "normal" person can), they currently attend a day centre which is under threat of closure due to cuts. Mind altering drugs, E.g. antidepressants are in my opinion usually detrimental in the long term, but they're being prescribed to autistic people more than ever as a "quick fix" instead of proper support / treatment, this could be covered too, how many autistic people are on this type of medication and how many find it beneficial or otherwise? Addictions could also be investigated including autistic people and drug or alcohol misuse, I suspect this is more common amongst autistic people, why is this happening and isn't properly addressed?

4. I answered "I don't find either offensive, and I am happy to be referred to as either.", but this is almost the same answer as the first choice.

These are just a few thoughts to get started, I may think of more later.

 

[Catana]

My question is: what does the poll have to do with the title of your topic? How someone prefers to be referred to is a personal opinion about language. I don't see it relating in any way to the questions you ask about research.

 

[Mr Allen]

IMO public perception of Autism needs to seriously change, contrary to popular opinion, people with mental health issues are NOT retarded, on the contrary most of us are of at least average intelligence.

 

[FlowerChild]

My question is: what does the poll have to do with the title of your topic? How someone prefers to be referred to is a personal opinion about language. I don't see it relating in any way to the questions you ask about research.

I am trying to work out what kind of language I will use in my research project -- this could include how I advertise for research participants, or my language in the questionnaire, or my PhD itself. I prefer 'Autistic Person' but some others prefer person-first language. I want the research to be accessible to Autistic people, and so wanted to gauge where people stand on their identification

 

[55853]

1. No, it'd be the same. I'd judge whether to participate or not by the content.
   
2. I'm up for any question, really.
3. What I'm personally interested in is how heterogeneous autism is in adults. There's clearly so much variety, but I've personally only seen this investigated from a biological perspective rather than a social science or social studies perspective (though this may exist - I am reading journals in my spare time rather than studying in this area, so I'm not the best at searching for social science stuff when I don't know terminology to search under). Also, I was diagnosed as a (young) adult, and I personally feel we've been forgotten to a large extent. Although this is improving in terms of awareness, I personally had to work it out for myself - I received the diagnosis, some documentation, but that was that. I think what should happen after diagnosis is something that needs to be looked into.
4. Done.

 

[Nervous Rex]

I prefer "person with autism" because it is part of me, but it shouldn't entirely define who I am.

I think autism research should focus on:

1) A more reliable, definitive test for autism, that any medical professional can reliably administer. Currently, a doctor or therapist who isn't an expert may identify individual symptoms such as learning disorders, anxiety, ADD/ADHD, depression, etc. Then an expert in autism will look at the whole picture and realize those symptoms stem from autism. The medical industry is sending people with autism a lot of mixed signals, and it would help to straighten those out.

2) Earlier tests for autism. The earlier someone can be identified and start learning to cope, the better.

3) Therapies to teach coping skills. People with autism need to learn to not expect to be like everyone else. We need to learn skills and methods to cope with our unique deficits. And we need to learn how to utilize our strengths to our advantage.

A cure? Don't waste your time. I believe the neurological cause of autism is so systemic that you might as well try to grow a new brain as cure autism. It's science fiction at this point.

 

[Fridgemagnetman]

Autismic.

 

[Mr Allen]

They didn't diagnose me till I was 23, who knows what my life would've been like if I'd been diagnosed a LOT earlier in life.

 

[Mary Anne]

I am trying to work out what kind of language I will use in my research project -- this could include how I advertise for research participants, or my language in the questionnaire, or my PhD itself. I prefer 'Autistic Person' but some others prefer person-first language. I want the research to be accessible to Autistic people, and so wanted to gauge where people stand on their identification

I read your poll with great interest, and was fascinated by the results.
So glad you explained the reasoning for the poll in conjunction with your Ph.D thesis. Current social and health political correctness mandate those of us working in the field of mental health to use “person first language.” It’s always interesting when the “person” themselves disagrees, and asks to be called something we are forced not to do in the workplace. It’s a great reminder to ask people and not just go by the rules.

 

[tducey]

Option 2 in the poll, as to the ? in the op:

So, I'll try to keep this brief, but I'd like to ask you all:

1 ) If an Autistic person were to undertake research on Autism, would you be more likely to participate in either an interview or statistical questionnaire, than you would be if the researcher were neurotypical? Why or why not?

It doesn't matter. This past December a NT (As far as I know) undertook a job study for people with Autism. My career counsellors are all NT's and have done good work for me.

2) What kinds of questions would you want to be asked or not asked?

I'm willing to answer any ?

3) What issues and topics do you think would be very important to cover, that Autism research and/or organisations currently tend to overlook?

Our spare time activities, also our specific interests. How we cope when we get overwhelmed.

 

[FlowerChild]

A cure? Don't waste your time. I believe the neurological cause of autism is so systemic that you might as well try to grow a new brain as cure autism. It's science fiction at this point.

Great, thank you! Just to clarify - I definitely don't want to find a cure, nor do I think one is needed. I think too much emphasis in current research is placed upon a 'cure', when most of us don't want to be neurotypical anyway! Thanks for sharing your thoughts

 

[FlowerChild]

They didn't diagnose me till I was 23, who knows what my life would've been like if I'd been diagnosed a LOT earlier in life.

Interesting - I didn't have answers until I was 24, almost 25! Part of me wonders how much suffering I could've avoided, especially in social situations, if I'd found out sooner. The other part of me wonders how much of my potential in life would've been unrealised if I'd felt limited by Autism--I pushed through a lot of things and struggled immensely (i.e. high school) and I think had I been diagnosed, I might have been removed from mainstream schooling, would never have played the high-level competitive team sports I loved so much as a teenager, and maybe never would've gone to university. I guess I'll never know!

 

[FlowerChild]

I read your poll with great interest, and was fascinated by the results.
So glad you explained the reasoning for the poll in conjunction with your Ph.D thesis. Current social and health political correctness mandate those of us working in the field of mental health to use “person first language.” It’s always interesting when the “person” themselves disagrees, and asks to be called something we are forced not to do in the workplace. It’s a great reminder to ask people and not just go by the rules.

Wow, thanks for sharing this! Yes, well studying Diversity studies I think the Autism identification debate is similar to the issue of preferred gender pronouns. I think people should ask - person-fist language is definitely preferred by some, and I absolutely respect each person's decision in how they want to be identified. For me, it's a bit nuanced and kind of a grey area. While I definitely see the value in person-first language, I also Think the 'Person with Autism' label risks being Ableist - to me it sounds like I have something wrong with me--or that I deviate from neurotypical people in an unfavourable way--and I don't want to feel like I am telling people I have a 'disease' (I am speaking from personal experience, others may feel very differently about this!). I think this is an especially important thing to consider, given the current dominant discourse surrounding finding a 'cure' and 'solving the puzzle', which is so deeply problematic, and hurtful to many of us. I think the notion of 'having' Autism reinforces this dominant discourse, through the further medicalisation of Autism (i.e. if I 'have' something, it can be 'fixed' or 'cured'). It also seems a bit biological essentialist -- many marginalised groups throughout history have been said to have a biological, genetic flaw in their makeup that 'justifies' a lower positioning on the social hierarchy, and I think the concept of 'having' Autism sways dangerously towards this territory.

I prefer to say I am an Autistic person, because this acknowledges that I am not Neurotypical, but without making it sound like I 'have' an undesirable medical/psychological condition, while still verbalising my personhood. It's like many people who identify as trans, non-binary or gender-fluid are against the medicalised notion of 'gender dysphoria' as a psycho-somatic diagnosis, because it insinuates there is something wrong with them, as opposed to there being something wrong with the surrounding social context that privileges heteronormativity and assigned gender roles. Any services I had access to that forced me to accept identification through person-first language would make me feel very uneasy, and that I lack agency and autonomy--almost as if the organisation will decide what's best for me, because I can't help myself. Again, when we look at the treatment of marginalised groups throughout history, often times the 'help' that is offered depends on the notion of a 'helpless' and 'biologically flawed' group of people who need assistance and 'saving' from those people located at the 'top of the social hierarchy' (in this case, i.e. Neurotypicals and medical and social work staff). I want to feel like I have the power to influence how my support is delivered, rather than feeling like I'm being 'treated' without my input. Thank you for being so aware in your position and considering the limitations of various forms of identification--as you said, when in doubt, it's always advisable to ask the person in question