ADHD or ASD?

[ihearttc]

To cut a long story short, DS2 is in the middle of a private ASD assessment (it’s a private peadiatrician who also works for NHS so recognised). He is 11 and about to start High School.
He is very bright but loses focus/attention really easily. Is very very active and always on the go constantly. He struggles with needing to be in control and when he can’t control the situation he has explosive meltdowns. He sort of fits a PDA profile but not so extreme.

After initial consultation she said her gut feeling was ASD and she’d arrange a school observation and ADOS. In the consultation he did everything that was asked of him but she said at some points he had limited eye contact and was unable to answer a question she phrased in a strange way (I also struggled to understand what she meant!).
We had a Connors form to fill in as did school. Both came back with scores above T=70 which as I understand it is indicative of ADHD. We also had to fill in a social communication questionnaire but the scores were low, so the report said not indicative of ASD.
He has just had his ADOS last week and she said afterwards that he performed perfectly, didn’t struggle with anything. She said that all the concerns school had noted (I’ve read the school report and it is very extensive and describes him perfectly) she was struggling to see so has given me another form to fill about sensory issues.
Im not entirely sure what my question is tbh but I’m concerned that they are not even considering ADHD especially given how high his school/me have expressed that he struggles. Don’t get me wrong, I don’t want him diagnosed with anything but I really don’t want him diagnosed with the wrong thing.

It does sound like ADHD might be worth considering. I have a friend whose sons were recently diagnosed (older than your DS) - I think boys (and girls) with more "inattentive" type rather than "hyperactive" type ADHD can struggle to get diagnosed.

There are lots of overlaps between autism and ADHD (I'm not convinced they won't turn out to be variations of the same thing) so it can be very hard to disentangle what is going on into a clear diagnosis based on today's diagnostic guidelines. As I understand it, both meltdowns and a need to be in control are largely an expression of sensory (or sometimes social) overwhelm/anxiety, so I don't see why they couldn't be just as consistent with ADHD as with autism but (as you can probably tell!) I only really know about autism - my ADHD knowledge is all second hand from friends.

Thank you, that’s really helpful. I do definitely think he has elements of both, more so now than when he was little when it was definitely more ADHD type behaviour but he doesn’t “fit” into a typical ASD type profile (I’m aware there is no real typical though).

In terms of ADHD, I would describe him as loud, fearless and bouncy with an inability to focus. He is very bright but hasn’t been able to finish reading a book for the last 2/3 years, he starts then loses interest half way through. He often needs several explanations of tasks at school and at home as doesn’t listen or doesn’t concentrate.

Ive always said I’d like a slightly calmer, slightly happier, more focused version of him.
He is great fun, a talented sportsman (when he concentrates) and a lovely friend, until he explodes and everyone and everything is his enemy.

Sorry can I just ask, how much has you paid for your private assessment? I'm desperate now and wondering if this is the route I need to look into for my own DS

It wasn’t as expensive as I thought tbh. I paid £250 for the initial consultation and if she didn’t feel that there was any need to proceed with further investigations then that would be the only charge. Then had to pay for a school assessment which was £350 then £500 for the ADOS. But it’s been spread over 3 months or so which has made it easier. She also said that not everyone needs all the assessments which would have made it cheaper. Waiting lists here are at least 2 years and with High School looming in September I couldn’t wait that long.

Thank you. In my area I'm looking at 2600 due to child's age apparently. It's worrying as the nhs waiting list is huge to even start the process but 2600 is alot of money which I don't have. But I see my ds struggling more by the day

My friend's son who was just diagnosed ADHD is definitely not fearless or bouncy - he's the most chilled person ever. But does struggle to focus and can struggle to manage his emotions (but I think that's a natural side effect of any kind of misunderstood/unaccommodated neurodivergence really - it's bound to become overwhelming at times and lead to outbursts). I would definitely pursue ADHD. Even if it's not do a diagnosable level, understanding his traits better and how he scores on the tests may help you support him.

I know sometimes EPs do more general assessments looking at learning style and very narrow facets of ability, to try to disentangle what's going on - could that be an alternative angle to explore?

i know this is an old thread but can i ask what you ended up doing? we are going through similar situation with my 11 year old DS

Hiya!
Im the OP (just changed my name). We ended up with an ASD diagnosis for DS. I’m still not convinced he doesn’t have ADHD as well but all the ADHD traits which I notice and school noticed, she put down to him constantly trying to self regulate. She likened him to a cup, everyone starts their day with the cup empty so can cope with whatever life throws at them. He starts with his “cup” virtually full so any little thing tips him over the edge.
I got him assessed because I was worried High School would be a complete nightmare and he wouldn’t cope. In reality it has actually been brilliant, he has coped brilliantly. In fact so brilliantly that several times I’ve questioned the diagnosis entirely but then he has a bad few days and I know why I went for the diagnosis.

Im glad things seemed to have worked themselves out. Our situation is slightly different as in Ds problem is impulsiveness and he will get angry and frustrated over not a lot and getting into a lot of trouble both at home and school. Making wrong decisions constantly. Very academic however recently the slightest pressure tips his ‘cup’ over.
We surprisingly had a paediatrician app where after telling us based on assessment he was on borderline but by the end of our appointment she thought he was mildly adhd. also thinks he might be asd but at the minute we can’t face goikkg through any more diagnosis.
We declined any medication for now but will review in 6 month.
have you decided on medication?

DS is also very impulsive and also gets very angry and frustrated, that was the main reason we went for diagnosis. He was managed at Primary School but I thought with the size of High School that he would just explode and be labelled the “naughty child” when in reality he is incredibly anxious over not being in control and his anger is his way of exerting that control. He is also very bright although never gives 100%.
No he’s not on any medication, because they wouldn’t diagnose ADHD only ASD there is nothing they can do. Only thing I will say is that the diagnosis has helped him hugely. I think because he is so able , it’s helped him to personally understand how and why he feels the the way that he does. He is much calmer since diagnosis, which may of course have been coincidence.

mrsconradfisher autistic children do sometimes take anti-anxiety medication, which can help lessen symptoms that are due to anxiety. Glad your ds is doing so well.

Ah yes, they didn’t mention that. His anxiety isn’t that severe that I would consider medicating him tbh.

Wow this sounds so much like my 11yo! He has an ASD diagnosis - we waited years for it and thought they were assessing for ADHD too but apparently we'd need to go on a different waiting list for that.
I have found myself questioning the ASD diagnosis as the assessment was all done online and I feel like he presents so differently to the other autistic kids we know. So it's interesting to hear these descriptions of boys the same age who sound so similar and also have an ASD diagnosis.

Wondering once you have an adhd diagnosis, does it make a huge difference getting an asd diagnosis too in terms of dealing with probelms? i can understand with asd diagnosis it might beneficial to get an adhd as you can only get meds through adhd?
we were recommended to get and asd diagnosis too but feel DS is already so overwhelmed with the idea of adhd let alone getting another.

I always had a gut feeling there was something but I always assumed that something was ADHD not ASD. I work in his school and I asked our SENCo what she thought before I started the process and she said he sits right in the of ASD and ADHD so she wouldn’t be surprised if he got diagnosed with either or both. Some of the stuff on the ASD diagnosis I don’t 100% agree with. It was claimed that during the assessment he said things which were not age appropriate at 11.5, one of which being “I’m not adverse to….”. I say that (no idea where I picked it up from!) so he has said it since he was tiny in context of course. She also noted that he drifted with different groups of children and had no one particular friend, that’s because his 2 best friends moved schools 4 weeks before they did the assessment and his other best friend outside school also doesn’t go to his school. So she scored him low for friendships?
He also scored highly for hyper fixations, because he spoke about football. He was 11 and played football for 2 teams plus an academy as he is a very talented player, so that is his main topic of conversation!

This sounds a lot like my 7 year old DS! He sits in the very middle of the two ASD and ADHD circles as you describe. I wouldn’t describe him as explosive, more as prickly, easy to irritate but he never gets to the meltdown stage. He can get very over excited though! No diagnosis yet. His dad just diagnosed with inattentive ADHD privately, we are going down the NHS route for DS, for the exact reasons you did for yours - high school. He hasn’t had a totally smooth time at primary school so far but nothing huge and now he’s on the SENCOs radar they have documented little adjustments to be made for him (being allowed to fiddle, movement breaks).

I have to say, OP. He sounds exactly like my son who has an ASD diagnosis...

I believe my son's is both ASD and ADHD. However they are going down the ASD pathway. But I believe he shows lots of traits of both. How do you go about getting both assessed at the same? Or do they have to be separate?

We are now going down the ADHD pathway first, we have our first face to face appointment in 6 weeks.

Does that mean if we want to pursue ASD afterwards, we need to start again? Surely not? DS had (what I've since learned) is an unofficial ADOS with a SALT, and she picked up attention/concentration possibly affecting social communication, which is why they are going with ADHD first (also DH has inattentive ADHD diagnosis).

Well ive been told its a different referall but they use the same agencies. Seems really long winded when all can be covered in the same panel meeting. My son has another assessment in April so I will raise it then. I've always believed it is both asd and adhd with various other things too like Dyspraxia, Dyslexia, SPD, PDA, OCD, anxiety

Seems very strange doesn't it @Anono2022 especially because there is so much overlap. I'm not impressed with the process so far, the paediatrician who we saw once, virtually, before Christmas, had clearly not even read the notes from the ADOS when we spoke yesterday. I had to point out he'd had one when she started talking about booking one, and then said oh yes I see...yes...thanks for reminding me...we'll assess him for ADHD then, GOODBYE. I know the NHS is stretched, but I work in the stretched public sector too and I would never get a way with not preparing for a formal meeting like that!

@freespirit333 it really is. The whole thing frightens me for similar things you mention. I've battled my son's whole life to get help for him. He has a good team of professionals around him but then you'll get someone who just wants an easy life. I recently had to request a Paediatrician report be amended. I was heartbroken as it wasn't anything like his F2F appointment. In clinic it was so positive. I barely had to say anything. He watched my son, spoke very openly about how he clearly displays several characteristics of ASC and ADHD, explained why he presents as he does and commended my parenting and told me to keep on this pathway as it's what he needs. Report came and it mentioned behaviour throughout. It was never was mentioned in the appointment. It also had opinions on his behaviours. I asked if he was suggesting it is a behavioural choice and why we didn't discuss this at appointment and he explained he isn't the kind of Paediatrician to be able to give his opinion on his behaviour so I requested this be removed. I suppose it upset me as it wasn't discussed in clinic and none of his other therapists have said it's behaviour. The Psychotherapist actually ruled it out really quick. And then it bothers me because its something like that that will get his assessment thrown out. My boy needs help. He won't manage in his teens if something isn't done