Why timely diagnosis of autism is important

Tracy Elliott, our Head of Research and Information explains why timely diagnosis of autism is important and tells us her family’s story:

Tracy and her family

Tracy and her family

“My daughter has a diagnosis of autism. The journey to diagnosis was traumatic and bewildering for my family. Aged 15 her self harming behaviour, driven by depression and anxiety, had become so severe she was a danger to herself and was admitted to a child and adolescence psychiatric unit five hours drive from our family home. She remained there for over 3 months.

Previously, unknown to us and for reasons not understood by herself, she had taught herself to copy and mimic the behaviour of her peers. From age 6 she knew she was different, she did not know why. She just felt something was very wrong and she had to hide ‘her weirdness’. Living in fear of ‘being found out’. At first this wasn’t so hard but as adolescence arrived it became impossible. She became suicidal.

The psychiatrist who saw her when she got to CAMHS had professional expertise and personal experience of autism (this isn’t always the case) and picked up on the autism, something no one else suspected as she did not fit any of the stereotypes. Her diagnosis followed within 6 months. The diagnosis explained to my daughter why she had the experiences she had, that she wasn’t ‘weird’, but had a neurological condition that meant her brain worked differently to that of most of her peers.

Exploring the diagnosis demonstrated that difference brought strengths as well as difficulties. Of course difficulties remain but they are understood, can be rationalised and coping strategies put in place. Things are no longer ‘impossible’ but ‘difficult at times’.  For my daughter her diagnosis came late. Mental health problems already entrenched and more difficult to address.

I was in a meeting recently that included senior medical professionals where a comment was made that early autism diagnosis was less of a priority to the NHS because without an effective intervention to offer there was less urgency required. While understanding the logic I was disappointed and saddened. It made me realise that people like myself and my daughter, who speaks publicly about her experiences, have to speak out. Key decision makers need to understand that even without an intervention an earlier diagnosis would have helped my daughter understand that she is not ‘weird’ but has a valuable contribution to make to her family, her friendships and society. That she is valuable not weird.

Earlier diagnosis could have limited the mental health problems that have plagued her adolescence and early adulthood. Earlier diagnosis would have made a difference to her and our family. Early diagnosis would have saved money on acute mental health services. As for intervention, well firstly it’s not all about interventions, understanding and support can go a long way. Secondly there are interventions that help, some currently being researched by Autistica, however accessing them is difficult (but that is a whole other discussion). My daughter did, eventually, receive valuable and effective intervention and it has helped. You can read my daughter’s story here.

Unacceptable delays for autism diagnosis exist across the UK. That’s for children who are already suspected of having an autistic spectrum disorder. For those children that don’t conform to stereotype, girls in particular, it’s even longer with some never getting a diagnosis. In my family’s experience diagnosis does matter, it does make a positive difference and that’s why I think timely diagnosis of autism is important”.

We want your stories about your family and getting an autism diagnosis. Do you think early diagnosis is important? What are your experiences?

Please send your stories to researchinfo@cerebra.org.uk.