When you begin your journey with ADHD it can seem a lonely place. If like me you knew little about ADHD (naughty little boys?) then knowing where to start is daunting. It doesn’t help when respected broadsheets like The Times, allow the publication of articles like ‘I’m Sorry, but all this ADHD doesn’t add up’. Celebrity Johnny Vegas made an innocent comment last month, explaining his recent diagnosis, saying “Everybody has an element of it. It’s how strong your filter is”. This seemingly throwaway comment has allowed sceptics to latch on to this ableist phrase, echoing the now thankfully fading adage of “we’re all a bit autistic”.
A little understanding!
The reason there are more ADHD diagnoses than ever is not that it is a fad or a trend, but because -like Autism, 10 years ago- the increased diagnosis rates directly correspond with professionals’ understanding of the more subtle presentations of ADHD (inattentive or combined type), especially in previously overlooked girls and women.
Views, comments and articles like this completely undermine the real day-to-day struggles of those with ADHD, and the complexities of the condition itself. It can also make those who suspect they may have, or that their child may have, doubt or question their gut instinct, and not seek help and/or diagnosis.
Our journey so far…
I thought it might be useful to talk a little about our journey as a family so far. Each of our journeys has been completely different. It all started with Sam…
Sam – 11 years old – 18 months from (school) referral …
When Sam had his Dyslexia assessment (July 2020), I remember there being mention of him possibly having ADHD, which we should keep an eye on. Within the year, the school and I both felt that this was a diagnosis that we should investigate. So almost a year to date, the school referred Sam via CAMHS for ADHD. When I received the forms (multiple choice mostly) to complete everything seemed to make sense with Sam. We sent the forms off and were told that it would be approx. 1 year till his initial appointment.
18 months on (for various reasons) we have only just had his initial assessment. We had to talk through everything they already had in writing. Whilst Sam was expected to sit through (about an hour and a half in total). In fairness, it allowed them to see exactly how Sam behaved in that kind of situation.
With it being so long since we originally filled out the forms, then we had to fill them out again. This time, with Sam having his own to fill out too (it took us three days to complete his). These have now been sent back to CAMHS and we wait, probably another 5/6 months for his final assessment/ADHD diagnosis.
The school have been amazing with Sam and supported us all the way. He has his own learning support teacher and a fantastic group of peers whom he adores. He starts secondary school in Sept, in an amazing school, with a fantastic SEND department.
Fred – 16 years old – 5 months from (self) referral to diagnosis
When I was completing the original forms in 2021 for Sam, I realised that Fred ticked a lot of the boxes too. Having begun to do my research on ADHD then I knew that it had a tendency to run in families. So I went with my gut and spoke to the GP. He was incredibly supportive and said that it did indeed sound probable. He then advised me to self-refer to CAMHS for Fred. As it would be as quick, or even quicker, than him referring #GoFigure.
Within weeks (Feb 21) they wrote to us with the forms to fill out (one for school, one for us). Once these had been returned we received his initial appointment fairly quickly (June 21). It was a Zoom appointment as the vestiges of COVID were still with us. I remember clearly Fred lasting about 30 mins before the Doctor told him he could go and she would just speak to me. An hour later, due to his age and obvious signs/symptoms, she was happy to diagnose him there and then.
This allowed us to ensure that he would have reasonable adjustments in place for his GCSEs and also discuss medication. Fred chose not to medicate as he wants to join Army College. The Army dictates that you cannot be medicated for at least 3 years before joining. It also states you must be ADHD symptom-free too… Now I’m no genius, but as ADHD is a neurological disorder then quite how you can be ‘symptom-free’? I’m hoping they’ve updated this since I last looked.
The school have tried to be supportive, they’ve put in place reasonable adjustments (well they have to don’t they) and some day-to-day support; but they are let down by a lack of funding and up-to-date understanding of ADHD and all its nuances. If you think of ADHD as an iceberg, then they only treat the surface and fail to understand what is going on below.
me – 48 years old – 10 months since (Gp) referral …
So in researching (or what we like to call hyper-fixating now we know, LOL) even more about ADHD to understand the boys, I started to stumble across more and more articles relating to Women & Girls being underdiagnosed. It was a lightbulb moment for me, I started to recognise myself in those women and girls. The daydreaming, the dysregulation, the crap finances, the always losing things, the forgetfulness, the disorganisation, the RSD, the impulsivity, the impatience, the lip biting, the burnout, the list goes on and on.
I decided to speak to my GP, expecting him to laugh and tell me to stop being so silly. But he listened, he listened a lot as I rambled, and then he agreed, he actually agreed! He said he needed to send me a couple of questionnaires/forms to fill out as part of the referral. I scored highly on both #Typical. So here I am waiting. Waiting for any more news. At this point in time I can’t even find any information on waiting times for adults here in York. I believe it is approx 2 years, but I know some areas are up to 5 years. There is the ‘Right to Choose‘ pathway. However, even they are inundated and waiting lists are anything from 6-18 months, if they are even accepting referrals.
So there are three very different journeys which I hope will show you that 1. You are very much not alone and 2. There are very many ways to support your/your child’s ADHD. Note that there is absolutely no correlation between the referral to ADHD diagnosis times, and who referred. I merely want to highlight that there are choices and that you need to trust your gut. If you truly believe you or your child may have ADHD and the school or GP is not listening/supportive, then you have options.
Unfortunately, wait times are horrendous no matter what route you go down. Currently it is a bit of a postcode lottery, anything from 6 months to 5 years seems to be the norm. But hopefully, after it was discussed in Parliament then maybe, just maybe they’ll begin to take those waiting times seriously.
Also, if you aren’t ready to go down the route of official diagnosis, then that is absolutely your prerogative. Unfortunately, the first part of the journey involves quite a bit of form-filling. Which, funnily enough is not one of our strong points, and can completely overwhelm us. I would encourage you to try though, especially if it is your child, as it opens up lots of emotional, practical and even financial support. Without an official ADHD diagnosis then you may not be able to request reasonable adjustments (school, further education, the workplace). You won’t be able to access financial support like DLA, PIP etc. (although again with the form filling #Urgh).
However, you will still be able to apply for an EHCP if your child is struggling. This is not based on a diagnosis. But on their everyday development at school and what help they require to access school. This is really important, and I was not aware of that at the beginning of our journey with Sam.
I’m only a message away!
I hope this has helped and that you understand a little more of the journey ahead. This community is coming under a lot of stick at the moment, for good and bad. Just remember to really trust your gut. And know that there is a whole tribe of us out there to support you on your journey.