Too often, when people receive their diagnoses of autism or ADHD, they are told that they have been diagnosed and then are discharged from services. This is usually not the fault of the professional, but of services not being commissioned to provide follow-up care, and of waiting lists for assessments being years long.
We asked neurodivergent people who were diagnosed as a child or young person (and their parents) what would have been most helpful for a professional to have gone through with them in sessions following their diagnosis.
This is what they said.
A lot of people commented that they would have liked to know what ADHD or Autism actually was and be helped to understand how it affected them. Many felt that they came away without really understanding what Autism or ADHD was, and what parts of them were autistic/ADHD traits. They would have liked to have been reassured that there was nothing wrong with them and that their brain was just slightly different, meaning some things challenging, as well as having their experiences validated. For example, being told:
“You’re not weird, your brain is different and that is why you struggle in these areas.” (@AutisticMidwife). Parents would have liked advice on how to discuss the diagnoses with their children and an explanation of why a diagnosis can be useful and not just a label. After-all, a neurodivergent person can be labelled as so many things before they finally get a diagnosis – ‘naughty’, ‘dramatic’, ‘sensitive’, ‘weird’. And a diagnosis is not just a diagnosis. It is understanding and knowledge.
An understanding of sensory difficulties, interoception and alexithymia would have been beneficial for many. Knowing that “not everyone feels the same way. Discomfort due to noise is something I can feel and it’s ok – knowing I don’t have to force myself to accept it because others ‘can deal with it’ would have been life changing”. (@sandra_actress). In ADHD, an understanding of ADHD paralysis and brain fog was highlighted. Strategies to help with sensory overload and these other things would have been useful.
However, people also shared that they would have liked their strengths and the positives of ADHD or Autism to be recognised, rather than only focusing on the negatives or difficulties. For example, “reinforcement of strengths not just reaffirming challenges. Making it clear that it’s not you that doesn’t fit the world, the world doesn’t fit you.” (@mancbird). This sentiment was echoed by many. One Swedish parent shared that it was a beautiful moment when their child was diagnosed and the professional wrote a long list of their child’s strengths, and then a shorter list of the challenges they had.
Practical support and signposting were also highlighted as important. Although many shared that they were sent away with links to books and websites, some felt that these were very generic and not targeted to them or their young person. They also felt that the various options of support available to them were not explained and they did not know what was available in their local area (for example speech and language therapy, occupational therapy, ELSA or support groups where they could have met families on a similar journey). Parents would have liked directing to DLA and support in applying for this, as well as support letters to school with recommendations of what may help. Understanding what accommodations they were entitled to at school was mentioned by several people, as well as understanding that schools have a legal requirement to make reasonable adjustments under the Equality Act.
Several people also shared that it would have been helpful to be directed to other autistic or ADHD people and role-models, for example famous people, or advocates online. “Exposure to role models! Being aware of the successes of people with ADHD has been a real comfort and motivator. I’ve found it to massively promote confidence in your ability to achieve.” (@IHousleyEDU). Seeing this positive representation can help young people to feel less alone. Building self-esteem, self-acceptance and self-advocacy were also things which people thought were important. One parent shared that “Part of self-advocacy would be the understanding that she was not ‘broken’, ‘weird’, ‘defective’, ‘annoying’, ‘unlovable’, ‘unworthy’ or ‘cursed’. She just has a different operating system – not worse – different.”
Following a diagnosis “just some positivity, joy and reassurance would go a long way. It’s all presented in such a negative light and then you’re basically left to it. So isolating and overwhelming.” (@Chitgrll). Proper explanation and space to ask questions, focusing on strengths as well as validating challenges, and directing to appropriate support and positive role-models are all essential to helping an autistic/ADHD child or young person embrace and understand their brain and what their diagnosis means.