The Diagnosis Journey
Nothing could have prepared me for the emotional, psychological and physical toll the ADHD and autism diagnosis process would have on me.
I approached my GP to request a formal NHS ADHD assessment in 2020. My GP, who for other health concerns was always supportive, initially dismissed my request because of my GCSE grades. It is a myth that ADHD = intellectual disability. Knowing this I persisted highlighting my ADHD traits.
Requesting my formal NHS autism assessment was more difficult. My psychiatrist later admitted they knew ‘’nothing’’ about ADHD or autism and they ‘’hold... hands up if there has been a lost or misdiagnosis’’. This was difficult to hear as they had labelled me as having BPD traits when seeing me for the first time at 18 years old.
During my 18 month wait I researched what it meant to live with undiagnosed ADHD and be autistic. I related to a lot of what I read.
Those 18 months on the waiting list were excruciating because I was going through so much change, and I was sure that once formally diagnosed there would be this miraculous metamorphosis. I thought that a diagnosis would grant me freedom from the shame of feeling like a failure despite trying so hard.
The assessment process for autism and ADHD has been challenging.
It has been well reported that NHS waiting lists for ADHD and autism assessments can be as long as five years depending on where you live. This has led to an increase in people seeking private assessments; Abi was kind enough to share her experience with me:
Abi had been seeking an autism and ADHD diagnosis for the last ten years. In her twenties, she sought a private assessment from a Harley St specialist which cost £4000 but they did not give her a diagnosis and she felt that her autism and ADHD characteristics had been explained away as cultural differences.
Abi went back to her GP to request a referral for autism and ADHD. She was struggling with burnout. Unfortunately, the GP did not agree to refer her and instead gave her a prescription for anti-depressants.
Abi had had enough. She was struggling with her executive function, and she felt fatigued all the time. This was when she decided to seek another private autism and ADHD assessment. She went to a private clinic, again paying herself. The service Abi received from the private clinic was supportive and understanding. In terms of the assessment process, she had appointments over three days, with assessments lasting three-four hours per day.
The assessments were comprehensive, and she received follow up reports after each appointment. She felt understood culturally despite her specialist not being Black and found the overall experience to be positive. Her assessments were online, and she was able to have them in the comfort of her own home. Once formally diagnosed, she received a large PDF pamphlet containing information on where to get support, but she was left to arrange this support herself. She researched adult autism support resources and discovered that they were limited which prompted her to visit her GP to discuss her diagnosis and future support. The attitude of her GP was indifference.
Educating myself on the facts and myths about autism and ADHD was vital because they are still largely misunderstood. This knowledge has supported me to advocate for myself.
The diagnosis process took an emotional toll on me and nearly a year later I am still feeling it. I have needed plenty of self-care and plenty of self-love. One way I have tried to do this is to catch myself when judging my emotions or shaming myself for my limitations. The way I talk and treat myself during this time needs to be compassionate and patient.
The process is far from perfect, but it is worth it because I needed confirmation. There is a certain peace that comes with knowing that I’m not broken. There is a power that comes from understanding how my brain is wired and how to work with it and not against it.
The biggest positive I have experienced in the last ten months is learning to have more patience with myself. Instead of chastising myself for not being able to maintain a neurotypical standard of living I now give myself more time and grace and I do not apologise for it. That itself is priceless and has made this ongoing journey worth it.
