We are only at the very beginning of what looks like it is going to be a very long journey to ADHD and ASD diagnosis for Arlo. We waited almost a year for our first appointment with a community based paediatrician and after a very informative and thorough discussion she did agree to send him through for diagnostic appointments with the teams for Autism, ADHD and Dyspraxia. Apparently the waiting list for these appointments can be up to three years with thousands of children in Birmingham currently on the waiting list.
So what now? A health care professional agreed that Arlo showcased various signs but in the meantime we are left high and dry? Without any formal diagnosis there is no access to medication, support, specific healthcare etc and that kind of stings. After so long waiting for that first appointment and me doubting myself, I feel vindicated now that I was right – Arlo’s somewhat extreme behaviour outbursts mean I’m not just bad at parenting, but there’s something going on. We just do not know exactly what.
Getting an ADHD referral
Unfortunately you can’t get in front of a paediatrician without a referral and it’s not just as simple as heading to the GP. For us they insisted that the school SENCO send across a referral to the relevant team. Even then there is no guarantee that the team will see you, at this early stage the SENDCO sent across a referral request with as much information as possible and sometimes these are triaged and bounced back by the team.
In Arlo’s case there was very little in the way of evidence from his behaviour in school. He seems to cope well in that he loves rules and routine, however his behaviour as soon as he gets out of the building changes dramatically. One thing which did concern me was his academic achievement. He was always a little behind in reception, but at this early stage and with him being summer born we were reassured that he would soon catch up, that it was a huge transition and not to worry.
I was worried. I had so many different examples of his behaviour from home which indicated to me that he was most certainly unable to focus. I also noticed changes in his social interactions. His sleep pattern (or lack of) was also a huge flag to me.
I explained all of these in detail with the school SENDCO who was kind enough to listen. When Arlo received his first academic progress report in year one it was apparent that he was not where he needed to be in many areas. My main worry was that if Arlo falls behind academically then he wouldn’t be able to engage with the curriculum, he would fall further behind and then this would have an impact on his behaviour.
Masking ADHD and ASD in school
The SENDCO made me feel reassured and this is where we first considered “masking” – for the first time I felt heard and was asked to put all of the things I noticed in writing for the referral. Some parents I have since learnt are not so lucky. School SENDCO teams really do not have much in the way of time and resource, I can see this from both sides of the coin being a teacher and a parent. It can be the first hurdle if a school doesn’t understand or agree, as you need them on side for the first referral.
I went away and researched from here about the signs and symptoms for ADHD and Autism. I looked at the current NICE guidelines and the traits assessed in diagnostics and so the email I sent to the SENDCO was thorough in that it included detailed examples of behaviour and patterns for every relevant symptom. This whole email was sent across to our paediatrician and must have been part of the reason we were triaged and put on the waiting list.
When we sat in the appointment the first thing our doctor said was that she had read this in detail and then she asked me if all of this was still relevant and if I had anything which had changed since, as it was of course written almost twelve months prior.
It felt like such a relief to hear that the doctor saw the signs that I had noted. During the hour long appointment Arlo couldn’t stop fidgeting. I had a huge bag full of stuff for him to keep him occupied and he delved right in for snacks and then some colouring in.
Of course lots had changed, and we spent the next hour discussing more specific recent examples and concerns I had.
Signs of ADHD and ASD
During the appointment Arlo couldn’t get comfy so repositioned himself several times, lying on the floor at one point and drawing his favourite Pokémon characters. Using both his hands to write with the pen and interrupting the conversation repeatedly. At one stage he tried to sit back up on the chair and then fell off it, knocking a pre existing graze on his hand. He was excited to get some fuss made over him here and get a plaster from a doctor – then when going across the room to put the rubbish in the bin he rushed tripped up over a wheelchair foot he hadn’t noticed.
He then wanted to tell the doctor about his Pokémon card collection – which I didn’t have in my bag. He tipped the whole bag upside down as he had saw me pack them but forgot he got them out in the car. I had to patiently explain that we had left them in the car but he needed plenty of reassurance and wanted to triple check, rummaging through my bag. He was quite happy to reel off a list of a dozen or so Pokémon and talk to the doctor about this which was a nice distraction. Forgetting a favourite toy or item can sometimes cause issues where Arlo gets seemingly irrationally upset and angry.
Arlo also found a bottle of water in my bag and played a prank on me, he likes to repeat this prank constantly as he’s seen it on YouTube – the one where you offer someone a drink and then squeeze it in their face. The first time he did it, I was shocked but I found it hilarious, but he repeats the same prank all the time. I can’t believe I didn’t realise what he was up to. It was the perfect opportunity to discuss social cues and the understanding of jokes, as well as his taking things very literally.
Asd and ADHD play
I was asked if Arlo likes to play – and use his imagination. I explained how Arlo loves to play but he likes everything to be just so – for example he re-enacts scenes from movies with toy action figures. Everything has to go the right way for him rather than imaginative, and so he often likes to play with people who are just as enthusiastic as him about the avengers or Pokémon. At home as he’s an only child, this is okay for me to go along with it. We have found a fabulous kids Pokémon club where there are some likeminded people to play with. In school I think Arlo struggles as of course his peers are developing their own ideas and opinions and might not always want to play “his way” – he seems content playing on his own.
I have however noticed that he sometimes struggles to engage other children and likes to watch for a distance and then try to figure out a way he can join in, often by showing a toy he has. Depending on his mood he either doesn’t want to share at all, or tries to give random kids in the park his most prized Pokémon. He will run and play around with people his age for a while but likes to come back to me as a base for a quiet moment, I think sometimes he wants to process conversations he has heard and then go back. He never seems bothered by it and I think so far I’ve done everything I can to make sure he is comfortable enough to ask questions, and he is confident enough in himself.
Hyperfocusing
In order to explain all this to the doctor I settled him down with his switch, and once we had turned on the game it was like he left the room, he was so focused that he failed to notice when I called his name to ask him a question. He had take himself down to the floor again sitting quietly, he literally can’t be torn away from the screen mid game, and it’s the same with things such as Lego or construction toys. He enters his own little world oblivious to everything around him.
These things all might sound like minor little incidents and perhaps common for his age group, but combined together in such a short time frame they offer first hand examples of some common traits which align with ADHD and ASD. The doctor stated as such, and said she would have been happy to refer based in the information we had discussed but also on the basis that she has been able to see this for herself in person.
The doctor drew a Venn diagram on a scrap of paper explaining how Autism and ADHD can often overlap and she also showed how things such as sensory processing disorder, pathological demand avoidance and even dyspraxia might also be interconnected. On this basis she has now referred Arlo to the correct teams for a formal diagnosis.
Living with ADHD and Autism
The situation however is dire in Birmingham. The small community based team is not able to cope with the large numbers of children currently waiting for a formal diagnosis. As I mentioned I have been advised that the waiting time until we go through the full process might be up to three years.
This is a little bit hard for me as a parent to deal with. Without a formal diagnosis I felt a little bit lost, a piece of paper which has the acronyms on it could make such a difference in some respects and without it, I’m not sure what kind of support or advice we can get. The main thing for me is ensuring that none of this affects Arlo’s school experience. I’m not pushing for a label as such but I’m very aware (as a teacher) that the funding for support in schools is often limited to an extent until there is a formal diagnosis in place, along with an EHCP.
As soon as the appointment finished it was time to go back to school for Arlo. I had a chance to chat with head headteacher who reassured me that school is fortunately in a position to be able to continue with the interventions that are already in place for Arlo and he is making progress and also that at the moment his behaviour is great and he’s enjoying his school experience. By the time Arlo is due to start secondary school we should hopefully have a formal diagnosis, and some ideas of what support he might need with that transition. We will also have a clearer picture of wether any of the signs and symptoms are age related things he might grow out of.
The other thing I am currently struggling with is accessing limited resources which are available. For example I had never up until now made use of a quiet access opportunity at a tourist attraction. I’ve looked and seen what’s available locally but never made the leap. I don’t know if I feel that someone might pop up and ask me for medical proof when we arrive. Sometimes Arlo is as good as gold in terms of behaviour and might not “look” like he needs to even access anything like this. I guess I need to start thinking myself about how not all disabilities are equal. I also felt that if we booked something like this then that might then mean other parents with children who may have a greater need would not be able to go. How do you even measure that? It’s a strange thought process.
It’s honestly such a minefield but this summer we have tentatively joined the SEND community and attended some activities such as tobogganing organised by SEND socials in Birmingam. I think finding a group of parents who are in the same or a similar boat is very reassuring. We have also been to a relaxed theatre performance and I was slightly overwhelmed, for once my kid wasn’t the only one who took his shoes off and couldn’t sit still. The cast was not affected at all and in fact all of the audience participation was inclusive. By the end of the show Arlo was dancing in the aisles and so were several other children. Having the time of their lives.
So this is where we are. It’s a very personal blog post for me to have written and I’m not sure when there will be any update to all of this. (I’ll make a note to come back in three years). For us right now it’s business as usual, the adventures continue as I’m entirely focused on giving Arlo the best life experiences and childhood memories possible. Here we celebrate our differences and embrace them.