There needs to be a better understanding of Asperger syndrome

Carolann Jackson is the President of SAFE (Supporting Asperger Families in Essex) – a local charity – and she runs the adult branch ASAP (Asperger Syndrome Adults and Parents).

She has a 33-year old daughter with Asperger Syndrome. She wrote this blog to highlight the particular issues of people with Asperger Syndrome and the prevalence of mental ill health during national Autism Week 2017.

What is Asperger Syndrome?

People with Asperger Syndrome look and sound the same as neurotypicals (non-autistics), but their brains are wired differently, thus few allowances are made for their autism.

Even with a confirmed medical diagnosis, they are often met with incredulity or scepticism by people who say, “You’re bright, you have a high IQ, so what’s your problem?”

The way people with Asperger Syndrome view the world and their understanding of how society ‘works’ and what is expected of them, is very different to the world of neurotypicals.

How can Asperger Syndrome affect individuals?

There is now considerable research and medical evidence that the more intellectually able the person with Asperger Syndrome is, the more likely they are to have experienced mental ill health and psychiatric disorders, and are more badly affected by them.

Here are some statistics from an anonymous survey I did with my adult members with Asperger Syndrome:

  • 86% said they experienced high levels of anxiety every day
  • 80% said they felt depressed and very worried about their future.
  • 71% admitted they had suicidal thoughts.
  • Within SAFE/ASAP we have had five actual suicides in five years.

There were also significant levels of truly debilitating Obsessive Compulsive Disorder, problems with anger management, paranoia, self-harm, eating disorders, drug abuse, along with lack of self-esteem, self-loathing and hopelessness about their future.

My findings are reflected in national research. Prof Simon Baron-Cohen (the world-renowned guru of Asperger Syndrome who heads the Cambridge University Autism Research Centre) wrote in his study which was published in the Lancet in 2014:

‘Adults with Asperger Syndrome are significantly more likely to experience suicidal thoughts than people from the general population. Sixty per cent of people with Asperger Syndrome in my study suffered from suicidal thoughts, compared with the rate found in the general population of seventeen per cent. 

‘Over one third (35%) of adults with Asperger Syndrome had planned or attempted suicide during their lifetime, and this was found to be four times more common in adults with Asperger Syndrome and a history of depression, and they were twice as likely to plan or attempt suicide, compared to those with Asperger Syndrome but without a history of depression. Our findings confirm anecdotal reports that adults with Asperger Syndrome have a significantly higher risk of suicide in comparison with other clinical groups, and depression is a key risk factor in this.’

Professor Baron-Cohen goes on to say:

‘Adults with Asperger Syndrome often suffer with secondary depression due to social isolation, loneliness, social exclusion lack of community services, under-achievement, and unemployment. This study should be a wake-up call for the urgent need for high quality services to prevent the tragic waste of even one life.’

The inability of people with Asperger syndrome to communicate feelings of disturbance, anxiety and distress can also mean it is very difficult to diagnose a depressed or anxious state, particularly for clinicians who have little knowledge or understanding of developmental disorders like Asperger syndrome.

In treating mental ill health in the patient with Asperger syndrome, it is important that psychiatrists or other health professionals have knowledge of the individual being assessed, and a good understanding of Aspergers.

What sort of mental health service would our Asperger community and their families like to see in Essex?

  • Recognition of prevalence of mental ill health in people with Asperger syndrome to assist with early intervention so that the signs of mental ill health in people with Asperger’s are recognised before they become too entrenched.
  • GP training is paramount since they are often the first port of call, many GP’s are not trained to recognise the signs of Asperger syndrome and simply see depression, anxiety or social phobia. Indeed all key staff within mental health services – Consultants, Psychiatrists, Counsellors, Therapists, Nurses etc. including people working within mental health agencies like Mind, Health in Mind, Re-think etc. should receive mandatory Asperger Syndrome training since numbers, especially among the older population, are rising.
  • People with suspected Asperger Syndrome, or those with a diagnosis of Asperger Syndrome, should only be referred to local mental health teams where there is a guarantee that the team has somebody who is trained to work with people with Asperger Syndrome.
  • It should be mandatory that there is one person within each Improving Access to Psychological Therapy (IAPT) team who has had specific Asperger Syndrome training. Alternatively, there should be one designated IAPT branch somewhere in Essex that offers at least one therapist who has been fully-trained in Asperger Syndrome, which GP’s and others can refer people to, regardless of borough boundaries or other restrictions. This ‘Centre of Excellence’ should be open to all who have a diagnosis of Asperger Syndrome, or who suspect they have the condition, regardless of where they live in Essex.

The incidence of mental ill health is rising fast in our Asperger community, but they still have nowhere to go to receive reliable and informed psychological support to relieve the symptoms of anxiety, depression and other debilitating mental health conditions.

With appropriate and timely mental health support (which is surely the right of every human being in a civilised society), our children – young and old – should be able to live meaningful and productive lives, and not be denied the equal opportunity that non-autistic people have.

They deserve to be able to access a mental health service fit for purpose and fit for them. It is not acceptable that simply through ignorance and misunderstanding due to lack of Asperger syndrome specific training and awareness that the effects of living with a mental health condition are unrecognised and untreated causing devastating lifelong consequences for sufferers and their families.