We spoke to some of our families about seeking a diagnosis for neurodivergent conditions (such as ASC and ADHD) and asked them whether they feel it has been beneficial for their child.
There is no doubt that getting a diagnosis is essential for some children and can be extremely valuable for others. It can lead to better understanding in school and at home, access to financial support in the education system as well a sense of belonging where a child might previously have felt like an outsider. For some children and young people, naming their neurodiversity can be liberating, empowering, and a key for self-advocacy. But the journey to diagnosis is often a long one, and CAMHS (Child and Adolescent Mental Health Services) waiting lists are at an all-time high for the vast majority who aren’t in a position to go private.
Given the unique nature of each child and each families story, we reached out to some of our parents who have been through both CAMHS and private assessments and received Autism Spectrum Condition (ASC, previously ASD), Attention-Deficit/Hyperactivity Disorder (ADHD) or other/combined diagnosis for their children to ask for their experiences and opinions. I want to thank these parents for sharing their stories so candidly. It is always emotional talking or writing about your child, their struggles, and their courage. We have changed personal details for anonymity and hope that reading about other journeys towards diagnosis will give you the chance to reflect on your own family and the unique way in which your child lives in the world.
Parents Share their Experiences of Seeking a Diagnosis
Jayden’s Diagnosis: ASC & ADHD
My son is 10 years old and was recently diagnosed with ASC and ADHD. I’m definitely glad that we went down the diagnosis route. The decision to go for an assessment was initially encouraged by the school. He was in reception when the first lockdown happened, and to be honest, we thought he was just behind socially and developmentally because of the situation. In year 1, they first suggested he might need additional support, and we have since been told he has a complex cognitive profile, and his neurodiversity includes ADHD, ASC, and dyslexia. We are pleased we went down this route, but we were lucky to be able to afford to go private. We know other families who began the process at a similar time and still have no diagnosis.
I’ve never been worried about the academic side to be honest. I want him to be able to read and write, but as time goes by, I don’t know if that will happen. Really, I just want him to be confident, happy, and accepted for who he is – a lovely, kind, funny, and imaginative little chap. At the moment, his social circle is quite broad, which is one of the reasons I don’t think we’d send him to a specialist high school. That being said, he is quite vulnerable and easily influenced, so that’s my main concern. We do now have an educational health plan in place, which will hopefully help in the decision for where he will feel most comfortable.
Maria’s Diagnosis: ASC
My eldest daughter is now 22 and has really found her tribe at university – with plans to stay in academia. She always had lots of very intense interests (crafting, baking, sewing, reading). She was also very slow to develop physically and never really wanted to move very much as a baby or toddler. She had some issues socially from about Year 4, presenting as quite rigid in her friendships at this time and getting very angry with other children who were being unkind to her.
As she went into secondary school she started to struggle more and more with friendships and became quite depressed. She gained a lot of weight and spent a lot of time in her room listening to audio books. She didn’t really have any friendships that lasted and things would often just go wrong.
We started looking at an ASC diagnosis when she was about 13. We went through CAMHS initially. At this point she was self-harming and the CAMHS practitioner advised us to go privately as the waiting list was around 2 years. We went privately and it took around 3 months. It was incredibly positive for our whole family. After the diagnosis we had family therapy with the clinical psychologist who diagnosed her for about 18 months.
I feel that getting a diagnosis is incredibly beneficial. Without a diagnosis it is rather like walking around without glasses when you need them. I cannot recommend it highly enough.
In terms of downsides, there was a sense for my daughter (and us) that we had missed something earlier on and I felt hugely guilty about this. She also felt that she wishes it had been spotted earlier so that she could have got help before. Now, however, she understands how it all happened and feels really lucky to understand herself so well.
Sama’s Diagnosis: ASC
My daughter is now 13 with a diagnosis of ASC, language disorder and learning disability. She is an incredibly sociable girl who loves learning with lots of interests and a very caring nature. We suspected from a young age that she had some additional needs and over time the challenges around social interactions, friendships, working memory, processing and sensory overload became clear to us.
We started the process around Year 4 at primary school but there was a lot of waiting to see how she would develop, and she was also very good at masking, as are many girls with ASC. But we eventually got a diagnosis of autism through CAMHS. They were particularly thorough and supportive. Their assessments were in-depth, and they involved us and listened to us sympathetically at every stage. The whole process with CAMHS took approximately 6 months.
It was emotional because during the assessments, we had to revisit all aspects of her life and how we raised her. Also, it meant facing the realisation that our child would be formally viewed as different and on a different life path to neurotypical children. We also had to adapt our parenting skills and adopt different strategies to the traditionally recognised ones, although this broadened our outlook!
The positives are gaining understanding and clarity of who she is – for ourselves, her family and professionals who work with her so that the correct strategies can be implemented. It is a gateway to the right support.
We haven’t told her about her diagnosis yet. The labelling and pigeon-holing by society worried us, although we don’t see it as a label personally, more a means of understanding her and ensuring she gets the correct support. Not everyone fully understands that every autistic person is unique and the diagnosis is not a narrow, life-limiting, ‘one size fits all’ view.
Felix’s Diagnosis: ADHD
My son is 10 and has a diagnosis of (inattentive) ADHD. He is a sparky, chatty, creative boy, with strong interests and opinions – very much his own man.
We were made aware of his learning differences in the early years of school. His teachers picked up on challenges with focus on areas that did not interest him, and delayed fine motor skills. But he is young for his year, and we wanted to give him enough time to develop before we went through the diagnostic process, the summer he was turning 8.
For us, the diagnosis has been very positive. We understand him better, so we can support him in the right way and encourage him to fulfil his potential, working with his strengths and challenges. And it has helped his school to do the same. Our son sees it as part of who he is, but doesn’t give it much thought beyond that!
The only negative for me was the way the diagnostic report was written because it didn’t give a balanced picture of who he is, with all his flair and charm. However, I also understand that the report’s focus on areas of need was useful for targeted support at school, so I could see past all the d words (deficits, disorders, delays etc). And he has flourished since then, so it in no way defined him.
As parents, we both share traits of this profile with our son, but do not have a formal diagnosis. My husband feels that it would have changed his life to have had a diagnosis in childhood: you can become the person you are meant to be rather than expected to be, understand how you work and what you need to thrive, rather than feel that you are at fault for not trying hard enough.
The Outcome of Seeking a Diagnosis
The parents we spoke to felt that, on balance, seeking a diagnosis was the right thing for their child. But they also considered the potential for unintended harm. Neurodevelopmental conditions are still assessed on the basis of challenges rather than strengths – it’s a deficit model. What we don’t want is for children to receive messages directly or subtly that they are in some way broken, disordered, and destined to struggle.
In order to mitigate potential harm we need to be careful about the way we talk to our children about their condition, remaining conscious of the messages they might be receiving from peers and wider society where there can be a focus on deficit rather than difference. See our guest blog on ‘The Positive Power of ADHD’ for further thinking around this subject.
It’s also relevant to consider that the Diagnostic and Statistical Manual of Mental Disorders (DSM) has undergone significant revisions since its first edition in 1952. More people now qualify for a diagnosis, including those with ‘milder’ or more context-specific challenges. In some cases, there could be a risk that typical variations in development or behaviour may be misinterpreted as ‘disordered.’
A final thought is the social question of resources becoming scarcer as a result of greater awareness and broader criteria. Evidence suggests that those who are already marginalised end up missing out on support because they don’t ‘shout the loudest.’ If you have been waiting years for a CAMHS referral, don’t give up – as an advocate for your child, your voice needs to be heard.
Parenting is full of complexity, even more so when your child doesn’t fit into the ‘dominant norm.’ We are required to dig deep and constantly re-think our approaches to help our children flourish. At its heart, good parenting is about accessing the source of boundless compassion that drives us to connect and love, helping us to recover from the hard times and pave the way for the future. We hope some of these personal stories resonate with your family and that you are close to finding the support you need.
If you are a parent or carer in need of support on the journey to diagnosis, our online therapists are here to help with the advice and tools you need. Book an Online Parent Consultation or get in touch with Chloe for more information.
