Diagnostic overlap between Asperger's and ABI

Jason Copeland

There is a significant diagnostic overlap between ‘mild’ acquired brain injuries and Asperger’s syndrome, an autism spectrum disorder. While confusion is possible, the dual diagnosis can help recovery from ABI, writes our man at the frontal lobe, Jason Copeland.

I discovered at age 54 that I had been twice brain-injured, at three and at six. My parents knew this, but they didn’t tell me: they let me thrash about unknowingly, upsetting people with challenging and then ‘inappropriate’ behaviour, rude and unempathic speech and actions, driving away friends, lovers, jobs and opportunities
right, left and centre. In 2008, aged 60, I found out that I have all along had Asperger’s syndrome, and may have had it since before the brain injuries.

The way I arrived at the correct diagnosis of my problems, after decades of thrashing about in therapy with psychologists, reveals much about these overlapping categories. After we had been together for five years, my Missus read Ratey and Johnson’s Shadow Syndromes. She formed the view that I had mild or ‘shadow’ autism spectrum disorder, which amounts to Asperger’s syndrome, a recently defined neurodevelopmental disorder.

Madame’s reasons made up a clear, albeit unwelcome, commentary on how I present to others. She said I had empathy deficit, I wasn’t good at reading non-verbal signals, and I interrupt a lot, among other things — all known signs of ‘mild’ autism. I was also, she said, rigid in some of my mental habits, and highly critical of other people, notably about language — grammar, syntax, usage, pronunciation, spelling, and the implications of these things for the telling of clear, literal and unambiguous truth. My attitude to communication was simple. A word means what the dictionary says it means: people should use words correctly to say what they mean, and mean what they say. All else leads to chaos. Evidently though, such straightforwardness and honesty are pathological symptoms on this planet.

All those items were cited in Madame’s readings about Asperger’s. I resisted her view at first, but later agreed to consult a neuropsychologist; and I was devastated when that one diagnosed childhood brain injuries.

As you can imagine, trying to understand, later on, the effects of brain injuries acquired early in life, is harder than when you have an adult ‘before’ to compare your post-injury self with. You have to do a lot of introspecting, humbly accept feedback from your nearest and dearest on what isn’t working, and put those together with a new, critical slant on memories of what has gone wrong in your life. By 2008, after six years of reading everything I could find on aquired brain injury (ABI), I thought I had the measure of the damage.

I accepted, with pain and grief, that I had been substantively impaired by my first brain injury at age three, and even more by the second, at six. I had obviously suffered, all along, things like loss of emotional self-regulation and cumulative damage to the learning of socioemotional skills; dyssemia, and badly impaired theory of mind; executive function deficits and learning difficulties; memory problems; mood disorders, and marked damage to the self-awareness. A double dose of post-traumatic stress disorder (PTSD, type IIB[nR]) and prolonged duress stress disorder (PDSD) from ten years of emotional, mental and spiritual abuse, completed the picture, explaining other emotional issues, neurotic symptoms and behavioural oddities. A lifetime of personal disasters, from age three to 54, came into focus for me. I had been consciously asking what went wrong since age seven; now I had a clear and nasty answer.

For a while, the answer worked. But for Madame, there were still unanswered questions. There was something about the depth, breadth and intractability of the damaged aspects of me that for her was still not fully explained by the ABI-PTSD story, comprehensive though that seemed. So, again at her prompting (but now more
willingly), I read up on Asperger’s syndrome, soon accepting that a comorbid diagnosis might be relevant. My reading included Robison’s autobiography Look Me in the Eye, which mentioned Tony Attwood’s first book, the Guide for Parents and Professionals; so after a websearch, I went on the waiting list for an assessment at the specialist Minds & Hearts clinic in Brisbane.

In August 2008, after a two-hour interview, I got the verdict: I am indeed Aspergian. There was no doubt about it: my profile clearly fits the diagnostic criteria, though the psychologist could not say whether the Asperger’s was there in potential form or already actualised before the brain injuries, or whether the ABIs triggered the Asperger’s. As Gillberg notes in his Guide, “genetic and brain damaging factors may act in concert, the genes producing the substrate (precondition) for the disorder, which will only becom(e) clinically manifest if there is also brain damage.”

That was all the research I could find in a hurry: so, I’m left with questions. Are Aspergians, actual or potential, more vulnerable than neurotypicals to ABI? Probably, given the clumsiness, klutziness, accident-proneness and the provocative behaviour, which was was brought about my second ABI. Can people with mild Aspergian traits, but not the full syndrome, become clear ‘Aspies’ after ABI? Very likely. For me, after over 50 years and with all material witnesses gone, there is no chance of an empirical answer to those questions now. Maybe, in time, the boffins will confirm the existence of genetic markers for Asperger’s, or refine
the definitive neurological picture.

So, what use is another label? Actually, this one is very useful. I re-read some of the Aspie literature, and found that many of the descriptions of typical problems of high-end Aspies fit me like a tailored glove, narrating my painful and embarrassing history
of misconnections with humanoids in much clearer detail than the ABI/PTSD story. There is a substantial overlap between the two diagnoses, especially with early childhood ABI: many of the problems are the same or very similar, and so are many solutions.

Both types can suffer (as I have, probably from both causes) impaired empathy, dyssemia, emotional and mental overload from too much sensory stimuli, slowing of internal emotional perception, socioemotional deficits, klutziness and the resultant peer teasing and mockery; social isolation, memory and self-awareness deficits, ego sensitivity or paranoia; physical clumsiness, lack of coordination and faulty proprioception; central auditory processing disorder (Holliday Willey [1999] calls it discrimination disorder), chronic and constant generalised anxiety disorder, perseveration, executive slowness or deficits and the need for lists etc., the need for literal communication, speech oddities, anger problems, depressive episodes, and other characteristics.

To read a description of one’s difficulties as being typical of a syndrome is very relieving: it finally banishes the last vestiges of self-blame. Now I can say with 100% certainty “Folks, sorry about the offensive rudeness, the social clumsiness and the other awkward stuff, but it wasn’t deliberate nastiness, and it really wasn’t my fault”.

And, just as importantly, reading the Aspie literature is greatly helping me to improve my self-awareness, challenging me to work on the weak and damaged bits and strengthen my positive abilities. It is a painful process, as I now have to revisit all the interpersonal disasters of the last six decades AGAIN, and see them anew in the even clearer Aspergian light. It’s a great relief though, as I can now wholeheartedly believe it really was not my fault: but the grief and despair are still heavy.

The Minds & Hearts psychologist recommended for all brain-injured ones: read the Aspie stuff, because it will help you focus on the weaknesses you need to work on. I will never resemble a ‘normal’ humanoid (for which I am enormously thankful); but I
can continue improving my social skills, moderate the challenging behaviours, and get more control over my life.

REFERENCES AND FURTHER READING
Try a title keyword search for Asperger in any library catalogue.

• Attwood, Tony, The complete guide to Asperger’s syndrome, London: Jessica Kingsley Publishers 2007;
— Asperger’s syndrome: a guide for parents and professionals, London: Jessica Kingsley Publishers 1998.
• Baron-Cohen, Simon, The essential difference: male and female brains and the truth about autism, London: Basic Books 2003.
• Gillberg, Christopher, A Guide to Asperger Syndrome, Cambridge: Cambridge University Press 2002.
• Holliday Willey, Liane, Pretending to be Normal: Living with Asperger’s Syndrome, London: Jessica Kingsley Publishers 1999.
• Oliver, Martin, “Shedding light on Asperger’s Syndrome”, Living Now, Melbourne, May 2008, www.livingnow.com.au
• Ratey, John J., & & Johnson, Catherine, Shadow Syndromes: Recognizing and Coping with the Hidden Psychological Disorders That Can Influence Your Behaviour and Silently Determine the Course of Your Life, New York: Pantheon Books 1997.
• Robison, John Elder, Look me in the eye: my life with Asperger’s, Sydney: Bantam Books (Transworld/Random House) 2007.

Try a websearch of ‘asperger & brain injuries’ as well. The following are worth a look:

• ASPIRES: Asperger Syndrome Partners & Individuals Resources, Encouragement &
Support: www.aspires-relationships.com
• Autism & Aspergers Supplies: www.bookinhand.com.au
• Help with Autism, Asperger’s syndrome & related disorders: www.autism-help-org
• Minds & Hearts: www.mindsandhearts.net
• Online Asperger Syndrome Information and Support: www.aspergersyndrome.org
• Jessica Kingsley is a leading publisher of books on Asperger’s syndrome: www.jkp.com