a large word map

Autism spectrum conditions have only become more widely recognised in recent years.  Now though, with the focus on assessment and diagnosis in young children, it is often when a child is diagnosed that the parents start to recognise certain behaviours in themselves or one another.

The interim period while waiting for an appointment for assessment and diagnosis can be very stressful. Counselling with a specialist counsellor during this time can be helpful for both partners but particularly for the NT partner.

Getting a diagnosis of Asperger's syndrome as an adult can be difficult, especially as the condition isn’t always easily recognised.  There are two routes to diagnosis: the NHS route and the private route.

I don't understand why people never say what they mean. It's like the immigrants who come to a country and learn the language but are completely baffled by idioms. (Seriously, how could anyone who isn't a native English speaker 'get the picture,' so to speak, and not assume it has something to do with a photo or a painting?) —  Jodi Picoult, House Rules

 

Before you decide (or dismiss) the possibility of Asperger's Syndrome being part of your makeup, this test, created by Psychologist Simon Baron-Cohen and his colleagues at Cambridge's Autism Research Centre was designed as a measure of the extent of autistic traits in adults.  If you read the paragraph before the test, you will note that "many who score above 32 and even meet the diagnostic criteria for mild autism or Asperger's report no difficulty functioning in their everyday lives."

Diagnosis by the NHS

The first point of contact should be your local GP who you can ask to refer you and/or your partner to the local mental health team.  For many, this team will be in their local town or city and provide an assessment and diagnosis.  Sadly, the waiting times in most areas are lengthy, varying from a few months to two years or more.

The Private Route to Diagnosis

The private route often involves the person referring themselves to the diagnostic service.  The cost of an assessment range from approximately £200 to over £1,000. The National Autistic Society has details of professionals all over the UK who have autism expertise.

Benefits of Diagnosis

For those seeking a formal diagnosis there are a number of benefits, including:

  • Understanding yourself
  • Explaining difficulties that you have had that were previously unexplained or misdiagnosed as mental health problems
  • Getting the understanding of others
  • If people close to you understand the reason for your difficulties it is much easier for them to empathise with your position.

Is it too late to discover AS or seek a diagnosis?

It is never too late for a person to increase their self-awareness, to focus on strengths and work on areas they find challenging.  Knowing about Asperger's Syndrome gives an explanation, not an excuse, for why life has taken the twists and turns that it has.  What a person does with this information will differ depending on their age and stage of life.  It is however important information to have and diagnosis can help in a number of ways including the opportunity to:

  • Renew and/or repair relationships affected by AS
  • Complete a life review
  • Find people who share similar interests
  • Find other people with Asperger's Syndrome either in person or online to share experiences and gain deeper understanding
  • Consider disclosure to family, friends, co-workers

Just as those who are considered neurotypical vary greatly, so the same is true of those with AS.  Whilst everyone with AS is affected by some common traits, the intensity of each trait lies along a spectrum and so the extent to which AS shapes a person’s life and experiences can differ widely from person to person.

My story

I had been married for 14 years. I was exhausted and felt like a single parent with three children rather than a mother of two sharing parenting with my husband. My friends couldn’t understand what I saw in a man who only seemed to talk on one subject and seemed to have no interest in anyone or anything else. We got into debt as he obsessively bought expensive gadgets. It seemed to me that he deliberately set up systems that made it impossible for me to have any control over our finances. I felt disempowered. Though we could live alongside each other quite happily for weeks at a time and he could be really kind, it became harder and harder to see that as a fair exchange for all the things I had to compromise upon.

Then a close friend emailed me an article about Asperger’s Syndrome and it changed everything. I realized he wasn’t deliberately making life so difficult and, after reading the list of AS characteristics, he too was convinced. We felt a diagnosis would be helpful to us both. We were right.

Because of the length of time it would have taken to be referred through the NHS, we opted for a private diagnosis which we got within six weeks. With a positive diagnosis of Asperger’s Syndrome my husband felt an enormous sense of relief, as though it explained much of his life that had left him feeling so anxious and out of kilter with the world around him.

The diagnosis was a relief for me too - now we knew what we were dealing with. Since that time, three years ago, we have worked hard to find ways in which we can both find happiness and fulfillment within our marriage. It hasn’t all been easy but things are so much better. I am happier being able to communicate to my husband in ways he understands and knowing he is trying his best to do the same. For example, following the diagnosis, we both sat down and wrote a list of all the things we wanted for ourselves and for each other from our marriage. This list is the starting point for each day of our lives together … and we’re getting there.

Anonymous 2014

Get in touch