One thing that almost very autistic person I know has trouble with is the treatment we so frequently get from mental health clinicians and also other health practitioners.
If you take the sample of one that is me, I can list a large number of negative experiences I have had while under the ‘care’ of health practitioners, all of whom knew next to nothing about autism and even less about me as an individual. There was the psychiatrist who overruled my autism diagnosis because it was made by a psychologist – and a young, female psychologist at that – so must be wrong. I was lumbered with a borderline personality disorder label instead and it stuck with me for several very unpleasant and invalidating years. There was the psychiatric nurse who responded to me being physically assaulted by a fellow patient by saying that I should be ‘less annoying’. Possibly the most puzzling was the psychiatrist who told me I couldn’t be autistic because I was ‘too cool.’ Was cool a diagnostic criterion? Who knew. Jokes aside, accessing healthcare is a problem for me and other autistics. We can be dismissed, misdiagnosed, bullied, given damaging ‘treatments’ and generally ignored. Finding clinicians who will understand us, our autism and who we are can seem impossible.
Thankfully there are a few strategies we can use to help us manage this issue.
- If you have the opportunity to choose which clinician you see, do some research. One of the best strategies is to ask other autistic people who have used the clinician what their experiences have been. You can also ask people for a list of good clinicians and, possibly more importantly, clinicians with whom they have had bad experiences so you can avoid those.
- If you are in publicly funded healthcare and do not get to choose your clinician and they turn out to be problematic, request a change, explaining why you had issues. If you are not given a new clinician you can contact a consumer advocacy organisation in your area (such as ADACAS or Advocacy for Inclusion in the Canberra region). These organisations can support people in dispute with healthcare providers and services. It is good if things don’t get to the point that you need such support but knowing what your rights are and what help you can access in terms of advocacy is a good idea.
- One thing which I have done with psychiatrists is what I call giving them a job interview. I simply ask a prospective psychiatrist how they feel about the concept of them being my employee. I am the boss and if I want to ‘fire’ them and hire another one I will. What to look for in response is not the answer to the question but the reaction to it. If your prospective clinician gets defensive or offended it is a good sign that they are a bit arrogant and arrogance is not a quality you want in someone looking after your health.
- You can bring a list of questions to appointments and / or a list of what you want your clinician to do for you.
- You can also bring a support person with you. This can be a family member, partner, friend or member of a disability or other advocacy organisation.
- If a therapist tells you that you have to see them and the relationship can only stop when they say so, don’t listen to this as it is incorrect. I had an experience of a psychotherapist who said this when I was younger and it turned out that he was highly inappropriate but because I was young and was getting the therapy sessions for free I thought I had to keep seeing him.
- It is better to not see a clinician than to see one who is a bully or who makes you feel scared or invalidated when you speak with them.
- One thing you can do is to help your clinician on their journey to greater autism knowledge. This will not only help you but also help other autistic clients they have. You can give them a list or autism resources to look at or just talk to them about what autism means for you. Remember that they may have already seen some information on autism but it may not have been very inclusive or from a strengths / Neurodiversity perspective so you can counter that with some more positive information if you like.
- It is OK to challenge a health professional. Sometimes it is a very good thing to challenge them if their understanding of you is making things worse and not better.
- Always remember that you have the right to respect, decent treatment and a therapeutic partnership free of negative power dynamics, bullying or cruelty.
- There is an old-fashioned but persistent view that health professionals and especially doctors, occupy a privileged place and people should respect them simply for their professional position. Not only is that untrue it is also very unhelpful when a health professional is mistreating or neglecting someone. We all have the right to fair treatment.
- If you find a good clinician then keep seeing them if you can. You can recommend them to other autistic people too.
Hopefully some of these strategies will help you navigate what is often a veritable minefield of finding health care which is actually helpful. I hope as time goes on this sort of post will be unnecessary but we are not at that point yet sadly.