Parents go to great lengths to get a diagnosis for their neurodivergent child, but there can be downsides, especially in the long term, warns Rae Stanley.
I have neurodivergent children, so I know how difficult it can be to get support for your child. Schools aren’t adequately funded, and the Children and Young People’s Mental Health Services are inundated with requests from desperate parents trying to help their children. I have been there, and it’s not an experience I wish to go through again. As my children struggled socially and academically through primary, I wanted to make sure that when they hit secondary school, they would get unquestioned support from their teachers. I laugh as I write this, because I realise with hindsight how naïve we parents are. Having the facts written down on paper by a professional and passed to the school didn’t give my children any magical powers to help them deal with their struggles. It didn’t miraculously conjure money for extra teachers, equipment, differentiated worksheets or more supervision. And it certainly didn’t mean that my children would suddenly no longer be disadvantaged. And now their childhood diagnosis holds them back as young adults.
I recently worked with two young men who both wanted to join the armed forces. They were physically fit and able to cope with the demands of a physical military regime. They both had full life skills, and their mental capacity wasn’t impaired in any way that would make them medically unfit for work. Both young men applied, and were rejected at the medical screening stage.
The first lad, Thomas, understood that the documented conduct disorder associated with his ADHD diagnosis meant that he would be deemed high risk in life threatening situations. His application was hastily rejected.
The second lad, Anthony, had a diagnosis of Autism Spectrum Disorder. He was diagnosed at the age of 13. Had he been diagnosed earlier in his life, he may well have been diagnosed with Asperger’s Syndrome (as his sister was). He had struggled socially with small talk and he’d been awkward to communicate with, which led to unwanted behaviours. As a young boy, he was impulsive and acted out when he was unsure how to communicate at school. He eventually attended a school that was deemed by his EHCP as being better suited to his needs. During this time it was documented in his GP records every time his parents approached what was then CAMHS when they were concerned about how to approach his ‘immature’ behaviours, including his anger and frustration during his time in the education system. Anthony needed a clear routine, he needed to know what he was doing and when. He needed to be active and interested, and he needed to be free to explore his amazing brain. When he was being effectively held in a box that was too small for him to grow, he got angry and upset. Anthony’s aggression faded throughout year 11 as he matured, and it disappeared altogether when he left school. Anthony had a clear plan. He wanted to join the Army, and he had worked out how to get there. He used the gym and took martial arts classes. He ate well, learned about survival techniques, about the different regiments, and he took online tests and quizzes. He strived to beat his personal physical achievements and, even though he detests reading, he tried reading manuals and books about army experiences.
Anthony had read that the Armed forces take people on merit, so he would simply need to pass the medical requirements. Anthony had no worries that he wouldn’t be able to pass. His autism didn’t affect him in day-to-day life any more, and the military regime would be a good fit for his personality and character. What Anthony didn’t know was that his medical records listed all his parents’ contacts with CAMHS about his past anger and aggression in school. This meant that, although Anthony was high functioning, he was still deemed unsuitable for the British Army. His argument is that he should be allowed to proceed his application to the assessment centre stage where he would be able to talk about his condition, and allowed to progress to Basic Training for his superiors to see how able he is to manage just as well as someone without his diagnosis. But he wasn’t given the opportunity to prove himself as his peers would. That piece of paper that had once held the hope of life improvement was now an albatross around his neck.
Thomas and Anthony considered applying to join the Royal Marines, whose recruitment policy appeared more likely to accept them, but neither of them young men had swimming as a great strength, an important factor in the Naval forces. They could of course have practised their swimming and built up the stamina and speed they needed, but neither wished to be a Marine. They wanted to be regulars in the Army. Frustratingly, there will be many undiagnosed people with ASD and ADHD currently serving. Not having that official documentation puts them on the same level as any other applicant.
So is it really worth getting a diagnosis? Most children know they must work hard to get the grades which will get them into the college and course of choice. But if they have an EHCP, good grades are not the only hurdle. One young person was told that her local College couldn’t accept her application because they don’t have to accept you if you have an EHCP. If they claim they can’t ‘meet the young person’s needs’, then the young person would be unable to take that chosen course. Thankfully, that young woman has found a college that works well for her, and was happy to take her on at a higher level than she had initially anticipated. But it wasn’t easy. She had to jump through hoops to get there.
When my own son was taking his year 11 exams, he was exempt from the oral English exam because of his struggles with communicating, and this was noted on his exam records and his EHCP. He passed the functional skills exams and should have gone on to a level 2 course as promised. But on enrolment day he was told that he would have to do a level 1 course and redo his English, and it wasn’t until January that the college recognised their error (after I had brought it up for the zillionth time). By then it was too far into the academic year, and my son didn’t want to spend another year doing level 2 when he should already have been completing it.
Why can’t we break down the blanket ASD diagnosis? Why can’t we determine particular categories of need, and give young people a more cogent diagnosis which expresses their strengths as well as their weaknesses. The communication between school and college needs to be more consistent, so young people can approach their futures more successfully. Perhaps secondary schools and colleges could complete an end-of-school wellbeing report, like the ones they fill out for the assessment stages, to be documented in medical records about how the young person is presenting at the time of leaving school. Detailing Anthony’s progress from 11 to 18 might have meant the difference between embarking on a career and getting stuck in a cycle of financially unstable, zero-hour-contract work.
I implore parents, particularly if your child has higher functioning or mild autism, to ask yourselves whether a diagnosis will really be worth it in the long run. Will the short term benefit, if any, be worth the long-term downsides?
And I implore medical and education boards to seek better ways to support young people moving forward. A diagnosis of autism is not a magic wand. It changes nothing by itself; it doesn’t guarantee better learning; and it will always follow a child toward their future as an adult.