So, my workplace asked for a report from my treating medical practitioner. To cut a long story short, I’ve been having episodes of illness and they wanted to know that I was well enough to do my job. On the face of it, perhaps a reasonable request.
And yet, so problematic.
It’s not only me. Getting appropriate medical advice and care is a HUGE issue for autistic adults. Even when we are seemingly highly-functional, fully-verbal individuals with jobs and houses and families – this remains an intractable problem for many of us. Here, I’m going to try and explain why that is.
From my employer’s point of view, it was reasonable to request a report from my treating medical practitioner after I was ill. However, it was a request underpinned by the following assumptions:
- (1) my condition would not affect my ability to access and communicate effectively with medical professionals;
- (2) my condition would be recognised and appropriately diagnosed by the doctors I am able to access;
- (3) the doctor should be considered the expert, whose opinion on treatment and management outweighs mine as the patient.
It is a regrettable fact that, due to inadequacies in the education of medical professionals with respect to autism spectrum disorders, none of those assumptions are necessarily correct – and taking them to be so could be harmful. Not just could be. I fear that assumptions like these are, right now, actively causing harm to autistic adults and children.
I’m not against the medical profession, by the way. Doctors in general are incredibly smart and deeply caring people who want the best for their patients (❤ to you all!) The issue is that they’re placed in the impossible situation of feeling pressured to provide diagnoses and advice to people with a condition they have likely received little training to recognise, and perhaps none to manage or treat – at least in adults.
But I’m getting ahead of myself. Let’s start with assumption (1):
Access and Communication
First off, booking an appointment with the GP can be a hurdle in itself – because it requires a phone call. Gah, no! OK, some may be fine with this, but others like me will only manage it after a lot of self-persuasion, and a few will just not even make the attempt and choose to live with whatever ails them until it gets severe enough to land them in a critical condition in hospital. Unfortunately, I am not kidding.
Then there’s the GP waiting room – which can be problematic for reasons that are hard to explain. I guess there’s something about being stuck for an indefinite period with a group of strangers in an echoing, barren room under clinical lights awaiting a difficult conversation? It’s a combo designed to freak out anyone, let alone someone with ASD.
And the actual conversation with the doctor IS always difficult. It’s like being in a foreign country, trying to explain your illness to someone who speaks another language. We get tripped up by taking their questions too literally (when you ask how long have I had this, do you mean how long since I noticed something amiss, or how long has it been intense enough to come see you, and do you include a few times when the feeling went away or I didn’t notice? What if I can’t remember the exact date it started?…) We get confused by having to describe feelings and pain levels (in a scale of 1 to 10? Relative to what? Bad enough that I braved the phone and the waiting room to be here, but not as bad as having a leg crushed in a car accident so… a five? Six?). Then with the stress and nerves of the whole situation causing us to grin or laugh while trying to explain our physical/mental agony, is it any wonder we get misunderstood?
Recognition and Diagnosis
The poor doctor now has to work out which of your symptoms are a part of your autism and which are something else. This is assuming that both of you are aware that you have ASD (which is not a given, considering the number of undiagnosed adults floating around).
Even if you are both aware of the autism, there is so much ignorance of the ways in which that can present, many of the things we commonly experience are seen as symptoms of mental illness or personality disorder. Even if the doctor has received training, it was likely specific to children and they may not recognise autistic traits in adults. Instead, there’s a high probability of coming out of the appointment with a mental health diagnosis. Take your pick:
- pathological avoidance of social events – social anxiety disorder?
- seem not interested in others – schizoid personality disorder?
- seem to be self-absorbed – narcissistic personality disorder?
- problems with executive function and attention – ADHD?
- over-emotional and unstable – borderline personality disorder?
- mood fluctuations – bipolar disorder? Cyclothymia?
- monotone voice and flat affect – depression?
- seem constantly nervous – generalised anxiety disorder?
- having stress reactions and meltdowns – adjustment disorder? PTSD? psychosis?
The fact is, what little training that doctors do receive on autism (even the psychiatrists to whom we are often sent) rarely covers the full range of our experience. For instance, even now, autistic meltdowns and burnouts remain medically unrecognised. Unbelievable, right? How can something so central to the autistic experience still be a medical unknown? Few medical professionals would be aware that ALL of the above “symptoms” can result from having an autistic brain and nervous system.
Management and Treatment
Having received a diagnosis, the expectation of an employer would be that one follows medical advice in managing and treating the condition. You can see the problem here, can’t you?
Firstly, there are no medications available to treat the core symptoms of autism. None at all.
Few doctors will admit this. Rightly or wrongly, they are determined to help you by trying you on whatever medication they think may be beneficial – and if that fails, by trying something else. And we have to comply, don’t we? Having been (perhaps incorrectly) diagnosed with a mental illness, the expectation of the doctor and the employer who requested the report is that we comply with the recommended medication regime.
Chances are, we’re going to come out of that appointment with a prescription for something like:
- an antidepressant such as an SSRI or SNRI
- an antipsychotic such as risperidone or aripiprazole
- a mood stabiliser such as lithium or lamotrigine
- a stimulant such as methylphenidate (Ritalin) or amphetamine (Adderall)
- a benzodiazepine sedative such as diazepam
None of these are without side-effects, some are addictive, and some can be dangerous if not carefully controlled. Even SSRIs, which seem to be generally regarded as harmless (and doled out by doctors like sweets, in my experience) can cause horrible withdrawal symptoms if you don’t taper off. So you don’t want to be taking any of these unnecessarily.
My Experience
Well, it was frustrating and stressful.
My employer wanted my treating medical practitioner to complete a report, so I went to my GP. Being sensible, and recognising that she knew very little about ASD, my GP demurred and referred me to a psychiatrist instead. There followed a 3-month wait for the psychiatric appointment, during which I was not allowed to undertake any fieldwork (cutting out half my normal work) due to not yet having the medical clearance.
I finally arrived at the psychiatrist wracked by nerves over whether or not I would get the clearance, and hence was immediately offered the opinion that I had an anxiety disorder. It was suggested that I take an antidepressant. Or had I considered risperidone? (This was without me requesting any kind of medication at all – I just wanted the report completed). She indicated she did not wish to complete the report.
Trying not to cry in frustration, I booked a second appointment to give it another go. That time, the psychiatrist seemed a little more willing to listen to my symptoms, however was quick to dismiss autism as an explanation and seemed determined to squeeze them into mental illness boxes. For instance, what I had been thinking were autistic meltdowns she first called panic attacks, then after I explained what they actually felt like, conceded that they were something else. I ended up with a diagnosis of Adjustment Disorder (fluctuating) along with Generalised Anxiety Disorder. (And there I was, thinking I was having an autistic burnout).
But to end on good news, she did finally agree to complete the report for my work. So I guess that all worked out.
(If you discount the 4 months of stress trying to get the report… and the doctors having no understanding of ASD… and nearly ending up back on antidepressants or on antipsychotics… and being diagnosed with two mental illnesses on top of my autism. Yay).
But seriously, if someone like me – a reasonably competent and verbal adult – is having issues being understood by medical professionals, how bad must it be for others? For the kids and the non-verbal autistics, and those with intellectual disabilities? That is the real concern. How many autistics are there on a cocktail of inappropriate medication, simply from having their symptoms misunderstood?
The Wandering Mind 