I thought I would share with you our experience of what it was for us to have an adult assessed for ASD/Asperger’s Syndrome. I have made it into two parts because it was quite challenging for us, and I feel it needs more than one part just to explain what an ordeal it was for us.
Husband (who I met through an online roleplaying game) has always been a bit different. He has always felt like an outsider and like he hasn’t fitted in, and has wanted to make friends but not had a lot of success, and has always been wary of new things, people and places. He coped as a child, a teenager and later as an adult by developing coping strategies and because he had the support of his amazing parents and siblings, and later, yours truly. We just thought that ‘Oh, it’s just the way he is’.
Then, our nephew was assessed for and diagnosed with ASD in 2014. Just by chance I picked up and read one of the books his mother, Husband’s sister, had bought on the subject while we were visiting them.
And it just all fell into place.
I read, reread, and read again the book and the diagnosis criteria for ASD and Asperger’s and I just though to myself ‘oh my goodness me, Husband fits every almost single characteristic on here!’
It was as though someone’d just turned on the light.
I sat down with Husband and talked about what I had read and how I felt it applied to him, and what it could mean for him and for us to get a diagnosis.
When Husband was a teenager, he was seen by CAHMS (Children and Adolescent Mental Health Service), due to the anxiety he developed after he was diagnosed with epilepsy as a teenager. The psychiatrist who saw him at the time verbally diagnosed Husband with Asperger’s Syndrome, however felt that because of Husband’s anxiety at the time it would not be beneficial to him to pursue a diagnosis at that time so it was left.
Husband graduated from college in 2010 and while he held down odd jobs or temporary contract, he could not seem to secure anything full-time or permanent. He currently works part time close to where we live and he this has done wonders for his confidence, plus he was also able to secure a casual job at another place (until they started being jerks.). But Husband had always struggled at work with interactions and reading the intentions of others and this impacted him and still impacts him at work.
To start the ball rolling, Husband needed a referral from his GP – we got this and a social worker came to the house and visited us in October 2014. She then made a referral to the local hospital for an assessment.
Husband was assessed by the Asperger team at our local hospital in January and March 2015. At the end of these assessments, which were done by a speech therapist, the team concluded that Husband did not meet the clinical criteria for Autism Spectrum Disorder or Asperger’s Syndrome, and therefore they could not help him.
The team stated that the difficulties Husband was experiencing is seen in many children who have been in the care system. We felt that this is not the case with Husband at all, as he has lived with his adoptive parents from when he was six months old through to adulthood. He has lived in a loving, supportive family, and he has not lived anywhere else.
Because of this we challenged their decision and asked for a second opinion. In addition to this, we felt that the tests they used to assess Husband with there completely inappropriate for assessing adults with.
To illustrate: when we went to the second appointment in March, Husband had to do three tests. We immediately became concerned as the worker stated at the beginning of the appointment that they were using children’s tests as the department could not afford the tests for adults (!).
One of the tests they performed was that they read Husband a list of phrases and idioms, each with four possible answers, and Husband had to select which one was correct. So for example, what does ‘cut that out’ mean? And then there were four options as to what it meant ‘stop it’ ‘cut something out with scissors’ ‘go away’ or ‘edit something’. There were about twenty of these and the only one Husband didn’t get right was ‘like water on a duck’s back’ because he’d never heard that expression before, all the others he got right the first time.
I can understand why this test would be appropriate for a child but I am not confident this test would be appropriate for an adult. Having Asperger’s Syndrome does not mean that you do not retain information. Of course Husband knows what these mean as he is an ADULT and he will have heard these phrases at some point during his life, and will have learnt what they mean!
We also felt that they have completely disregarded the evidence Husband, his mother, and I gave to the social inclusion worker when she came to talk to Husband after he was referred by his GP in October. She asked Husband how he felt about eye contact for example, to which he replied that he knew he had to do it, but had to think about it a lot.
His mother and I raised at second assessment that Husband struggles with several different aspects of daily living, including changes in routine, going unfamiliar places, and situations where he’d be in a group. All of this seemed to be disregarded by the team.
So when the team announced that Husband did not meet the criteria in their opinion for Asperger’s Syndrome, and that they could not help him, I burst into tears. I cried all the way home and felt very despondent. It was as though they did not believe us at all and just dismissed all the evidence we had given.
When I had calmed down enough, Husband’s mother said we had the right to a second opinion. This was arranged and set for August 2015.