As someone with both an autism spectrum diagnosis and a history of mental illness, I fall into that intersectionality politely called ’dual diagnosis’, although it often feels more like ’falling between two stools’ than eligibility for duplicated supports. I am lucky to have won the postcode lottery and live in Cork City, the base of the only HSE-funded community support service in the country for adults with Asperger syndrome, where I get excellent social and other supports from Aspect, part of the Cork Association for Autism. I am unlucky to live in a country that otherwise has no services whatsoever for autistic adults (post 18 years) and where ’dual diagnosis’ means being shuffled between mental health services (as and when mental health is impacted) and social or disability support services. About 70-80% of people with Asperger syndrome also experience depression, anxiety and emotional difficulties. Suicidal thoughts are common and often difficult to identify. I want to share a particularly difficult recent encounter with psychiatric care that others in a similar position may find helpful to talk about.
I have been suffering from anxiety recently and, unlike Asperger syndrome, anxiety does cause me a great deal of distress. I do call anxiety ‘suffering’. I don’t know the answers to anxiety (or even, much of the time, where my anxiety comes from), but I have a few techniques for reducing or distracting my mind from anxious thoughts.
I recently had a conversation with a psychiatrist about a long-standing problem I have with waking, in a state of panic, frequently drenched in sweat and having vividly unpleasant thoughts in my head. Sometimes the thoughts and sensations of the dream can take ages to clear. The psychiatrist’s take on it was amazingly fresh: perhaps this is a consequence of neurology and not of psychic disturbance. The dream may be evoked by the senses (a sound or a smell), or represent some attempt at rationalizing a sensory experience. This has implications for how to respond to sleep disturbance and distressing dreams.
Adults with Asperger syndrome sometimes find themselves in a twilight land between social, medical and disability supports, where the issues of daily living are neither a ’medical problem’ nor a ’disability problem’ — just like ’normal’ people. Many adults with Asperger syndrome have arrived through other diagnoses first, or have current mental health issues (comorbidities). Formal supports tend to assume one primary need, such as disability support if IQ is below a threshold of 70 or mental health services when psychiatric symptoms are deemed clinically significant. The formal supports are not integrated, may prohibit access to more than one service and address social issues through their own re-interpretations. Medication can be very helpful, but can also be used as a substitute for supporting the life issues that are causing difficulty.
TLDR? This is a rant.
This network map of prescribed medication began with a couple of informal surveys on an autism web forum, where it was rapidly obvious that prescribed medication exceeded any guidelines for the treatment of autism. Remember that medication is not recommended for the core symptoms of autism, because there are no medications that improve core function. There are many medications that assist with symptoms associated with autism – anxiety, depressions, obsession and challenging behaviour.
Below is a graph of psychotropic medication taken from the latest edition of the British National Formulary (68th edition, 2014). Individual medication names as generic name (Brand name) appear down the centre column. To the left are the psychotropic family groups and to the right are the main symptom family groups. E.g. atypical antipsychotic -> aripripazole (Abilify) -> schizophrenia, linked in black. The coloured lines indicate that this treatment path is recommended for challenging behaviour in autism by the US National Institutes for Mental Health (blue), Cochrane Collaboration and Griffith’s pharmacy guide (green).
This image is a discussion topic, not a scientific finding, and feedback is welcome.
Presentation at the 6th Annual Critical Perspectives Conference, 12 & 13th November 2014, University College Cork. The conference considers and explores:
- the value and relevance of psychiatric diagnoses in understanding and responding to a wide range of human experiences of emotional distress
- Critical perspectives on and creative responses beyond psychiatric diagnoses
Audio of the presentation (35 minutes, 11 MB):
PDF handout (6 slides per sheet, 3 sheets in total, 1.8 MB):
Stuart Neilson – The value of labelling (handout)
In an informal straw poll of the prescription drugs that a group of adults with autism, they reported using Antianxiety medication, Antidepressants (SSRI – venlafaxine / Effexor; SNRI – duloxetine / Cymbalta; tricyclic – amitriptyline), Stimulants (Dextroamphetamine; Ritalin, Concerta / Methylphenidate), Antipsychotics (chlorpromazine / Clonactil) and Mood stabilisers.
They also reported using Beta-blockers (propranolol), Atypical antipsychotics (quetiapine / Seroquel; Abilify / Aripiprazole), pregabalin / Lyrica, progesterone.
Of those who did use prescription drugs, the use was:
Antidepressant drug 25%
Anti-anxiety drug 22%
Antipsychotic drug 2%
A combination of these 27%
Other psycho-active drugs 16%
Other (non-psycho-active) prescription drugs 5%