ADHD underdiagnosed in women, My Story by Petra

2 Nov 2021

Last month we shared a link on our Facebook page from the BBC that talked about the discrepancy between diagnosing ADHD in boys and girls. When I first read this article, it really struck me, as in recent years I have come to suspect that I may also have ADHD. As I’ve mentioned in previous blog posts, I do have a diagnosis of dyslexia and dyscalculia.

About three years ago, we started getting an increase of clients referred to us who have a diagnosis of ADHD. This led me to research more about the condition and “just for fun” do some of the online screening tests that are available. I scored very highly on these screening tests; however, I am aware that there is a lot of crossovers between dyslexia and ADHD, indeed all neurodivergent labels. However, the more I have looked into ADHD, how it presents in adults, in particular women, I have found more and more that I identify with the traits. Over the last 18 months, as my job as a trainer has moved from being very active, driving around the country delivering face-to-face training, to be very stagnant, working purely online from my home office, I have noticed the hyperactivity and lack of focus that are hallmarks of ADHD more.

Also in the last year, my mother discovered all of my old school reports and passed them on to me. Reading these reports, it was again clear that ADHD traits have been present since childhood. I always knew that parents’ evenings resulted in my parents being told that I was disruptive to other children through my incessant talking and that I had a tendency to daydream. The reports not only reinforce this, but also alluded to the fact that I was very good at starting projects but not very good at seeing them through to completion. Looking at the individual subjects, it was interesting to see that I had very positive reports from teachers in practical subjects such as science, music, PE and drama however very negative reports from the more academic subjects such as geography, history and languages. Obviously, the dyslexia would have influenced my poor scoring in these classes, however, comments by the teacher’s state that I had a tendency to be disruptive in these classes as well.

Last year, I mentioned to my assessing social worker, as I was applying to adopt, that I thought I might have ADHD. Lacking understanding around the condition, and how it presents in adults, the social worker and her manager refused to take me to the approval panel unless I had an ADHD assessment. Although I didn’t feel that this was necessary, I spoke to my GP about how to get an assessment. Having read the article posted on our Facebook group, I realise I was very fortunate with my GP as, although he was not aware of the diagnostic pathway, he said that he would investigate this for me. A few weeks later I received a letter from the psychiatric team of our local healthcare trust stating that I had been put on a waiting list. In the meantime, I had looked into getting a private assessment which I discovered would cost me an absolute minimum of £400, this would be done online and would not involve any assessment on medication, that second assessment would cost another £400. However, I have heard from ADHD Facebook groups, that many of these private assessments are not accepted by the NHS or Local Authorities and so I would have had to continue getting any medication privately, and there would be no guarantee that the local authority adoption team would accept the assessment.

A year later I’m still on the waiting list! I spoke to the GP again and he mentioned that the trust does not, at the moment, have any funding to do adult ADHD assessments and so the waiting list is only growing longer and there is no way of knowing how long it would be to get an assessment through the NHS. Thankfully, I was assured by various professionals that most adoption agencies would not require an assessment and so I applied to adopt through a different agency and I’m now approved.

I don’t feel too badly about my teachers not picking up on either my dyslexia or any possible ADHD as in the 80s neither condition was very well known. However, I could tell that my initial social worker’s concerns about me mentioning ADHD were more related to her lack of understanding about how this presents in adults, and women and girls. Her background was very much in children social work and I imagine her only experience of ADHD were little boys who were being physically disruptive and possibly feared that I would be exhibiting these kinds of behaviours. This type of prejudice and lack of understanding shows how adult women with a diagnosis of ADHD can be discriminated against due to people not being aware of the differences, and this in itself translates to professionals who are in a position to diagnose, or not, young girls who are struggling with these ADHD traits in the classroom.

I think I currently have around three female clients who are currently waiting for adult ADHD assessments, one of these, who is particularly struggling, has decided to pay privately in order to get the medication that she needs, I was able to refer her to the ADHD Foundation for support in this area. The others however are waiting for an NHS appointment, one having been given an appointment for 12 months’ time.

Therefore, I agree, that more needs to be done around getting girls and women diagnosed, however, generally speaking, more needs to be done in getting adults the correct diagnosis as so many have been missed in childhood and as the article showed being misdiagnosed as having mental health issues, possibly experiencing mental health conditions as a result of misdiagnosis or lack of diagnosis.