Phase Two of our research program is now well underway. Ten participants have signed the consent form to formally enrol, and completed their first assessment. Another thirteen are at different stages of the “booking in” process. I’m delighted to have had such a positive response from families coming forward, and I so hope they will find their experience enjoyable and beneficial.
It has been fascinating for me seeing how different parents respond to the news that their child has autism. I’m not making the diagnosis myself of course, but because the children we’re recruiting for our project are so young, many have only been diagnosed very recently. An assumption I have always made is that the more severe a child’s autistic behaviours, the greater the challenge for the parents. For example, a child who is entirely non-verbal will be harder to communicate with than a child who does speak, even if that speaking child echoes a lot of language, or uses words in an idiosyncratic way. In turn, this communication difficulty may lead a non-verbal child to have tantrums and exhibit other challenging behaviour when they can’t explain their desires and needs. Worse, without the reward of being called “Mummy” or “Daddy”, all of a parent’s efforts to support their child must feel unappreciated. This is surely incredibly frustrating for the whole family and my heart goes out to parents in this position.
However, I have also come to a realisation that having a child with autism whose abilities are more comparable to other children of the same age presents unique challenges which can be equally frustrating to manage. Children in this category are so close to being ‘normal’ that there is a particular desperation on the part of parents to bridge that gap. They are invited to compare their child to his or her typically developing peers, and consequently feel extra-anxious about the areas in which their child is struggling. Ideally, we would judge any child’s progress relative to their own personal history, or in the case of children with ASDs, relative to autism-specific norms at least. But when you are faced with a fluent, chatty, intelligent child aged four, who doesn’t know how to play with other children, and who falls apart in a crowded playground, there must be a particular longing for normality which can eclipse an appreciation of their strengths and how far they have come. The lesson? – don’t assume that a parent of a child with autism ever has it easy.
This issue relates tangentially to a new research project which I’m developing with some colleagues at the University of Edinburgh. We are applying for funding for a project which will look into ways of helping adolescents and adults with autism into employment. In particular, we want to focus on the job interview as a situation in which the candidate with autism can really struggle, and which obviously creates a barrier to getting offered a job. One anecdotal point which will be followed-up is that those who seem on paper to be more severely affected (for example, with associated learning difficulties) may do beter in a job interview than people with less apparent forms of autism, who are bright and well qualified. This may be because the difficulties associated with their autism are hidden and so they are expected to perform at the interview in the same way as a neurotypical candidate. These hidden difficulties come to the surface and their strengths and achievements get lost. For this reason, one of the strands of our proposed research project is to develop ways of educating employers about autism and promoting the use of alternatives to the job interview – like on the job training and trial periods. Here’s hoping we get it funded!