I have been driven to write this as I am undergoing investigations as to a potentially serious issue cased by a gradually increasing level of one of my meds over time. I’m not just talking about this experience because it is cathartic or anything, I am writing about it because it illustrates a lot of the issues autistic people can experience around accessing healthcare.
In my current problem there seems to have been two main factor at play. The first was my own difficulties with interoception – the ability to sense what is going on in my body. Poor interoception is very often a problem for autistic people and things like physical health symptoms and pain tend to be difficult for autistics to be aware of or to describe. So about a year ago I noticed that my hands were involuntarily twitching. It caused breakages of bowls, dropped phones and involuntary clicking of the mouse or keyboard when I didn’t want to. I had other symptoms and figured they were worth checking out as it seemed unusual. I had a GP appointment so mentioned these issues to my GP who, from her reaction, clearly had no idea what it might mean so dismissed it. In my mind I interpreted that this mustn’t be anything to worry about: I had consulted a health professional who wasn’t concerned, so therefore I had no need be concerned.Time went on and things did not improve. I was so tired – sleeping on weekends during the day which I have never done before. I figured it was just because I was getting older. The only thing which made me think I needed assistance was when I had lunch with some autistic friends in Melbourne, one of whom runs a program called Access Health Autism – more about that soon. I recounted the twitching and fatigue and she suggested that maybe I was experiencing neurological issues caused by my medication. I resolved to ask my psychiatrist about this next time I saw him, but when I had the appointment my poor little Jeanette brain was having issues so the appointment was focussed on that.
I still did nothing. I just figured my health would improve and I could get myself to work and impress my boss and my intellectual capacity was only slightly less than it had been in the past….
Thankfully last week I had a flash of inspiration. A relatively new symptom had started: shakiness. Pushing the button down to flush the toilet would cause tremors, as would coming home on a hot afternoon or doing the slightest physical exertion. This was actually something I know I had experienced it before. Last Saturday evening I felt odd in exactly the same way as I had in the past. I finally realised that was related to one of my meds. I put my medical two and two together and actually made four – an unlikely metaphor in my history of accessing health care! Being me – ‘I’m indestructible! Just give me work to do and a cat and I’ll change the world! – that person – made me supremely unconcerned. Here comes a key factor in accessing health assistance – the supportive words and concerns of trusted friends. I put my suspicions about the cause of my heath issues to my Facebook family. I have a number of friends who are medical practitioners and neurodivergent themselves tell me to do something about it because it could be serious. I made an appointment that afternoon with the after hours doctor. I was terrified she would dismiss what I said but thankfully she didn’t and in fact was so convinced of my self-diagnosis combined with m presentation that the only good test she sent me for was levels of that medication! She called my on Monday night (yes, there was some inner panic in author-land!). The medication level was high and had increased significantly over the past year.
There are lessons from this experience:
- Autistic and neurotypical people communicate in a fundamentally different way. If a neurotypical medical professional assumes their words and non-verbal communication are going to be understood by every single patient they see in a similar way, this will be an issue. There is a solution to this and it is to provide enough information about autistic communication styles and also issues autistic people can have around accessing health care to medical professionals.
- Medical professionals often misinterpret the communication of autistics. This is likely to be significantly heightened for those who do not use verbal speech.
- Autistic people often have a very limited ability to be aware of the sensations going on in their body. They may have a very high – or very low – pain threshold which can mean they miss out on care – sometimes urgent care – because they don’t fit the expectations of the doctor.
- This low level of interoceptive awareness also has an impact on the autistic person knowing whether and how soon they require medical assistance.
- Assumptions, ableism and stereotypes can colour a medical professional’s understanding of the autistic individual they are treating.
- This information is not just about having a poor experience with the GP. These issues can result in serious illness or injury not being treated for a variety of reasons. The end result of this can be death, chronic health issues or significant acquired disability. Recent research shows that autistic people have a significantly lower life expectancy than the general population.
- Many autistic people (including me on a lot of occasions) have had bad experiences of healthcare settings – such as discrimination and trauma.
- Medical settings, and particularly the emergency department, can be a horrific onslaught of sensory nasties, prejudice by staff and anxiety and panic.
- Autistic friends or family are often a great place to talk with about your health concerns as they may have similar experiences to you and are likely to be supportive,
- There is a wonderful service that I mentioned before: Access Heath Autism. For a reasonable fee the person running this, Kathy Isaacs, who is autistic and a nurse of many years experience, will do an extensive questionnaire with you and put together a report on your individual experiences and needs in accessing healthcare. She will also do a letter for medical professionals treating you. I am about to find a new GP (for reasons which are probably obvious reading this!) and will take the report Kathy prepared with me for my first appointment. Here is the link for Access Health Autism if you are interested http://accesshealthautism.com.au
- Everyone has the right to appropriate, supportive health care.
And as to my own health issue…well I see my specialist today. I have thought about the best and worst case scenarios and understand from experience that the real outcome probably won’t be on one or other end of that scale. I am pleased to have a positive attitude, lots of strategies, a loving family and friends and the world’s best cat (I’m slightly biased!). I’m hoping whatever the treatment, that I will get more of my energy back which would be wonderful. It has been a hard year for changing the world having no energy and wanting to sleep all the time!