You can head to TikTok and find a thousand creators sharing their experience of obtaining an adult ADHD diagnosis. However few are sharing their experience online or IRL about paediatric assessment and diagnosis. Here is our very personal experience of getting our youngest son diagnosed for ADHD.
As a caveat I will state right now this is our experience, and that not all counties or NHS trusts operate in the same manner. We have been under two very different Trusts, who operate in polar opposite manners. If you can, speak to your GP to find out the exact process in your area.
Right, now that is out of the way, our journey to diagnosis began when our son was 3 years old. He was diagnosed with Autism initially, as this presented as a higher hinderance to accessing education than the ADHD. Yes our son was diagnosed very young. Many families cannot get their child before the relevant medical professionals until the age of 7, and even then only with the cooperation of school. It can be even harder for accessing diagnosis for girls. You will become an expert long before you get that illusive confirmation of diagnosis.
Now we did have an ace up our sleeve in genetic inheritance of autism. Two of my three step sons were diagnosed with autism, as their half brother it made it easier to be taken seriously with the traits we were identifying as our youngest developed. My daughter was also diagnosed shortly after, as she presented strongly with female specific traits, although she was in her early teens before this happened.
Now to the ADHD diagnosis. There are three types of ADHD – Hyperactive, Combine and Inattentive. Although in children only hyperactive and inattentive are looked at. There are a plethora of diagnostic protocols and resources online, the dominant being the DSM-5 ADHD Paediatric diagnostic criteria. This is a simple set of questions in three segments, which you answer according to the behaviour traits observed. This one tool is likely the key that unlocks the door to diagnosis for many parents. If you suspect your child demonstrates traits, then find one and complete it. Take it to school and discuss it with the SENCO or take it to your GP to discuss with them. be prepared that even if there are indicators, they may want a lot of additional information and may even dismiss you at the first visit. This will be a long journey.
For us, we already had ADHD in the family. The moment we cited research about ADHD being hereditary we were listened to. I myself had not long had a diagnosis, so we knew it came from me. Believe it or not, it is quicker for an adult to get assessed and diagnosed than a child, IF there is enough evidence of ADHD traits. I must say that too many throw the term around like it is a medal of honour, it really isn’t. So only go forward to talk with your GP if you actually believe you have ADHD.
Back to our experience. We had to wait a long time before we had our first appointment. We had a video consultation in the first instance, and then six months later our face to face consultation. This appointment opened with being asked if we were open to medication. Now at this point we were open to medication, and so we were advised that had we said no that would have been the end of the appointment. as we had agreed to use medications, we were then given our sons diagnosis there and then. It is therefore highly likely that if you are not prepared to even try medications, you will not get a formal diagnosis. It was also clear to us that the decision had been made over six months prior following the video consultation.
I don’t fully understand the delay between initial to diagnosis is difficult. As a parent the waiting is at times infuriating and unbearable. So please make sure you have support in place, a friend to have a vent and a coffee with is paramount.
Another invaluable tool in your arsenal to help get into the diagnostic pathway is a diary and trait log. Keep a diary of all the incidents that occur which could be perceived as an ADHD response. This could be excessive fidgeting, demand avoidance, executive disfunction, disorganisation, and all the incidents that trigger a meltdown around these traits. It will feel like you are focusing on the worst parts of your child, and to a degree that is exactly what you are doing. However, there is a reason for it, because without evidence in a diary, or in videos, the people who stand between you and the specialists you need wont believe you. You need to show them your child through your eyes.
Now once you get your diagnosis and begin your medications (if you choose to) do not expect a magical overnight change in your child. It is subtle! Talk to them about things they notice. For our son it was that he could hear without the constant buzz of the lightbulbs. This was a huge indicator that the medications were helping.
We had an additional advantage as we deregistered our son from school. By far the best decision we have made to date. The medications helped him massively with emotional regulation and concentration. He took his medication in the morning and they lasted till around 3pm. We stayed on a relatively low dose, because the goal is not a zombie child but an aware child. Medication is simply a preprogramed sat nav for their high powered sports car, in that it helps direct them where to go as they already have the energy to get there, just not the focus. Trust your instincts!
As I have already said, each NHS trust in very different. Write down your questions, your concerns and ask them. You are their parent, do not allow that to be disregarded because you are your childs primary advocate. It will be a long arduous journey, but you are strong enough to push through.
I hope this helps you, let me know if you want to know what happens through the adult diagnostic process. I will do a post to help where I can.