Child with aspergers
Aspergers,  Borderline Personality Disorder,  Mental Health

When Aspergers Is Good News

I know I’ve been posting irregularly of late. 2014 has brought fresh challenges and it’s taking a lot of my time to navigate them. Some are still too nebulous to commit to print but others have reached a solidity more conducive to sharing articulately so I’ll try and explain.

It’s funny… we go months in our family without seeing a doctor – I’ve only been once in the three years we’ve lived here – then suddenly here we are, test-driving not one but two distinct areas of the Canadian healthcare system.

 

REACHING OUT

Just recently I made the difficult decision to ask for help managing my mental health. My diagnosis of Borderline Personality Disorder (BPD) means I’m used to self-monitoring my emotional ‘temperature’. After a sustained period which saw my appetite and motivation plummet, my responsibilities become overwhelming, and the reappearance of some negative methods of wresting back control, I made an appointment with my doctor.

Despite the bumpy start I’m still optimistic I can get meaningful help from Canada’s mental health resources – it’s just that age-old problem of knowing where to get it in a foreign country whose health system is largely a mystery to me, and having the strength and focus to obtain what I know I need. Unfortunately, in many cases the mentally ill have a harder fight to get the help they need than others in the doctor’s waiting room.

 

A MOTHER’S INSTINCT

Rewind a year, and I was making another difficult decision. Rejecting the well-meaning reassurances of friends and family about quirky third child characteristics, I acted on my niggling worry that my youngest wasn’t communicating as effectively as her siblings had at a similar age and made a doctor’s appointment. A referral to a Speech & Language pathologist saw my suspicions confirmed – in terms of language development she was a year behind.

We’ve since been offered workshops and one-on-one therapy and, at the recommendation of a developmental pediatrician, S will undergo an ADOS (Autism Diagnostic Observation Schedule), an instrument for diagnosing and assessing autism.

We’ll have a clearer picture after the test in a couple of weeks but I’m glad I acted on my instincts and we’re doing this now rather than later, by which time her behavior and self-esteem might have been irreparably affected.

 

A CHANCE DISCOVERY

In the weeks before the appointment resulting in the ADOS referral I randomly clicked on a link to a ‘test’ claiming to measure autistic traits in adults. It was called the Baron-Cohen Autism Spectrum Quotient (yes, there IS an Ali G connection, it was devised by Simon Baron-Cohen, his cousin; Vice-President of the National Autistic Society (UK) and obviously the scientist in the family). I answered a set of fifty questions used to help determine if an adult exhibits symptoms of autism and scored well within the range for “clinically significant levels of autistic traits”.

Initially I thought nothing of it – it was an online test after all, how reliable could it be? – but it stuck in the back of my mind and two weeks later I went back and did it again… and again. The results varied by a point here or there but were still consistent. I tried it on my husband, figuring maybe it put everyone in range. His score was so low any doubts about it being a ‘one-size-fits-all’ deal were instantly dispelled.

 

A CHANGE OF DIRECTION

I had begun researching ASD (Autism Spectrum Disorder), specifically Asperger syndrome, with S in mind but I couldn’t help noticing a lot of what I read rang true for me too – difficulty with the unspoken cues and expectations of social relationships and problems controlling feelings such as anger, depression and anxiety.

Add to that the fact that girls and women are particularly astute at camouflaging the signs and making up for cognitively what they lack instinctively, I began to wonder. According to research 46% of first-degree relatives of a child with Asperger’s have a similar profile, and the lack of access to diagnostic knowledge in previous years means there’s likely to be a deluge of referrals of adults for diagnostic assessment as more children with ASD are identified.

I was surprised to discover that, in spite of differences in clinical appearance, there are a number of similarities between ASD and BPD. Because ASD is a neurological condition (thus present from birth), difficulties in coping with the challenges it presents can give rise to psychological problems – mood disorders, eating disorders, movement disorders, etc. – which are then diagnosed on their own merit, leaving the root cause undiscovered.

 

A DIFFERENT ATTITUDE

But perhaps the thing that surprised me most was the way I felt about a possible diagnosis of ASD for my daughter and myself. It was a strange kind of positivity, bordering on pride – after years of being different, of feeling like an observer, to discover that’s how you were made and not what you need to correct removes a lot of ‘what if’s’ and brings accepting yourself within reach.

Asperger syndrome is no picnic but at least I know my husband and I will do all we can to ensure S gets the help she needs. She’ll have support, understanding and encouragement instead of the recrimination and rejection I experienced growing up.

While my husband is skeptical of another ‘label’, I want to know if the cause for my behavior is physiological or psychological. I manage my condition through Cognitive Behavioral Therapy (CBT). I consciously examine my thoughts and make choices about how helpful/realistic they are and adjust my behavior accordingly. But this studious approach can be mentally exhausting. When you have to push your boundaries and confront your fears on a daily basis, you begin to question at what point the determination to push through should become the decision to accept what you are and stop pressurizing yourself to change.

Simply put, a difference in brain wiring would mean a physical cause, not a mindset that’s been ‘chosen’, however inadvertently. It would relieve me of some of the guilt I carry around for my faulty thinking.

And as for my daughter, don’t we all like to think our children are special? I have great curiosity and admiration for those who see things from a different perspective, and with the right support I see no reason why she’s any less likely to grow up to thrill and astound us. An early diagnosis can be a ticket to freedom not a life sentence.

 

Author’s note, June 2014: Since the time of writing S was found to have Aspergers and I’ve been re-diagnosed with Aspergers and Bipolar II. I no longer meet the criteria for BPD and given the existing cases of Aspergers and bipolar in my direct family I have to admit this re-diagnosis seems a more accurate explanation for my symptoms. Oh, the beauty of hindsight… 

 

6 Comments

  • Kate Thompson

    This is SUCH a pertinent post for me. As a parent of a son with Asperger’s and twins on the spectrum, I have long suspected I too have AS. Like you I took the test and scored well within the required range for suggested dx. It DOES impact my life and I have had BPD and BP suggested to me also, but AS fits by far the best – and explains my behaviour when I was small also. I think you put it so well – that the difference it would make knowing if it was physiological or psychological, and how much you should challenge yourself DOES have an enormous impact on your health and happiness. x

    • Aisha Ashraf

      Oh it’s always SO refreshing whenever I hear from someone who ‘gets it’. It has a HUGE impact, and it pees me off when people who frankly don’t have the foggiest what it’s like to exist inside me disguise their patronising insistence that ‘I’m fine as I am, I just need to put myself ‘out there’ more’ as sympathetic support, when really it just reinforces the message that you’re not acceptable as you are.
      Phew! Rant over 😉 and thanks so much for leaving a comment. I’d love to know if you intend to pursue an assessment.

  • Rhona Sweeting

    What a wonderful post.

    As an adult woman with a late-life (34) diagnosis of AS myself, I found this sentence particularly pertinent:

    “It was a strange kind of positivity, bordering on pride – after years of being different, of feeling like an observer, to discover that’s how you were made and not what you need to correct removes a lot of ‘what if’s’ and brings accepting yourself within reach.”

    EXACTLY how I felt! Now, after years of self-directed anger and guilt, I feel as though I can get on with forgiving myself and living life as the best ‘me’ I can be, not what others want.

    Thank you for your writing, I wish you and your family all the best.

    • Aisha Ashraf

      Thank you. Hearing from people like you who ‘get it’ because they’ve lived it too is another huge boost. It’s so heartening to know we’re not alone, isn’t it?

Fewer than 1% of visitors leave a comment - be different, be heard, be someone with an opinion.