We often hear how parents struggle to obtain an autism diagnosis for their child. Long waiting lists, lack of funding from local authorities and sometimes sceptical attitudes from schools and health professionals are some of the common obstacles.
Surprisingly, despite the fact that there are often good reasons for seeking confirmation of neurodiversity, not everyone feels that a diagnosis is always the correct path. Here, four experienced SEN tutors explain their differing experiences.
Diagnosis Brings Strategies for Support
Rebecca’s daughter, aged eight, has just received a diagnosis of ASD. Although the family suspected she was on the spectrum, having a formal acknowledgement of their concerns felt reassuring, she says. The report outlined the girl’s strengths and difficulties and provided helpful suggestions for support in the classroom.
“Having a diagnosis has also been beneficial when out and about,” Rebecca points out. “She was able to apply for an Access card so she can avoid long queues at events and is able to use quieter toilets. We also contacted local SEND activity and support groups including swimming lessons and a girls’ social group where she has made good friends.
“Most importantly, we feel the diagnosis has given our daughter a greater understanding of herself and why she sometimes feels different to her peers,” Rebecca concludes. “She has spoken to her class about being autistic and has shared books about neurodiversity with her teacher. We hope the diagnosis will continue to be positive for her into the future.”
Learning to Manage Behaviour
James has worked with numerous young people with SEN and has observed how many have benefited from the understanding and support that a diagnosis can bring. However, he fears that pursuing a diagnosis for one of his own sons, aged ten, would be counterproductive.
“He has some repetitive behaviours and OCD can obscure his concentration,” he elaborates. “This borders on PDA to a point though is not aggressive just ‘awkward’. Teachers say if he doesn’t listen or carry out an action in a timely manner, he can be disruptive. He is up-to-speed with all his learning and often finds his own interests more interesting. He is also a great communicator, he’s empathetic and understands social cues and norms.”
James speculates that his son could probably be diagnosed with ADHD or autism but has noted that his challenging behaviours can be conquered with concentration, direction and reminders. “I worry that if he had a ‘reason’ for his behaviour he would not need to work on it – he would have a ‘get-out-of-jail-free’ card,” he continues. “Life takes work and anything worthwhile needs compromise. These challenges are within his power to overcome with support and guidance.
“I have taught other young people with ‘labels’ and some have used them as an excuse to not engage or try, as they perceive failure before they start. Although there really is a place for diagnosis, for some people, some things are just difficult and many people have difficulties.”
Negative Associations of Autism
Charlotte believes she is autistic but is certain that she doesn’t want a formal diagnosis. “I was brought up with autism being an insult,” she explains. “It was due to some ‘lacking’ or an inability to be good enough for other people. My mum used to joke about it when I wouldn’t show her affection as a child, along with other traits.”
Now in her early thirties, Charlotte identified herself as autistic a few years ago after being told by doctors that she was depressed, anxious or bipolar. Through therapy, introspection and studying neurodiversity, she says she has learned to manage her life and to fit her work patterns around daylight hours and nature.
“I recently read that many women get misdiagnosed where their male counterparts with the same symptoms are diagnosed as autistic,” she continues. “Because of this, to pursue a diagnosis would open me up to more medical misogyny, remind me of countless. negative experiences with doctors and aid me in no way.
“The component that makes sense to me – and that mimics these depressive disorders – is complex-PTSD (post-traumatic stress disorder). Growing up autistic in a neurotypical world is traumatising in small doses over and over again.”
A Diagnosis can Bring Relief
Conversely, for colleague Jenna, receiving a diagnosis of ASD as an adult brought clarity. Like Charlotte, she had been misdiagnosed with different mental health conditions. “I have struggled all my life, feeling different,” she explains. “I felt as if I was on a TV show when I was with other people, like I was playing a character. The effort of this made me ill and by the age of fifteen, I had been diagnosed with depression and in my twenties, bipolar disorder.”
Each diagnosis provided relief but this was only temporary because the medication and treatment didn’t match Jenna’s needs. After struggling for years, last year, suspecting she might be autistic, she contacted a psychologist for a diagnosis. “Apparently, I had the highest score of any female she had seen! It’s a relief to know myself better and understand why I feel the way I feel.”
