Diagnosis of ADHD a while after ASD

[MrsMartinRohde]

DS1 (9; yr 5) was diagnosed with ASD 18 months ago. At the time (because I didn't understand ASD) I was surprised because I thought his characteristics pointed more to ADHD, mostly inattentive. His year 2 teacher completed the referral forms, and it was so starkly clear his big problems with focus, inattention, executive function, organisation, etc. However, when he was assessed, the psychologist said he considered all of it to be part and parcel of ASD. He did say, well, youu could see if he responds to medication, that's the litmus test, if he does, he has ADHD - but I didn't know what the process was for pursuing that as the service we were in right then was diagnostic only and once he had his report he was discharged with no follow up.

I have since seen our GP and mentioned it again because obviously nothing has changed in that respect. School has finally decided it would serve them to get input from the educational psychologist, despite this being one of the recommendations 18 months ago. DS has been in smaller intervention classes since yr1, but he is getting further and further behind the expected levels nevertheless.

So the Senco has filled in the forms and I saw them last night and while I am happy this is happening, my heart sank. It's exactly the same - of course - as was detailed as DS's problems 2.5 years ago, the inattention, executive functioning problems, inability to focus. (I feel sad at the time that's passed, he was 6 when he was referred and now he's 9 and just 2 yrs from high school).

What I am wondering is: would the EP's report, when we get it, carry any weight if I pursued an ADHD diagnosis now? It's not that I wish my child to be medicated but if would help him, then I would. He's a bright child and he's working way below his potential, given his intelligence.

Anyone else been through this? I am going to be seeking a needs assessment for EHCP at some point this year because high school looms and while DS is just about managing at primary, with intervention in English and maths, and social groups and ELSA input, he's not thriving in any way, even there (they only went back this week and already there are issues that require more meetings and emails with his new teacher, down to his communication problems, and following up from two internal exclusions at the end of last term) and I utterly dread the future as things stand.

Yes
DS (9) was diagnosed with ASD at 5, and ADHD earlier this year.

We trialled medication but it didn't make any difference HOWEVER he was on a very low dose.
Then everything changed with his school and he's moved from MS to SS, starting last week.
So we're now going to see what difference the smaller classes, SS approach makes first to his attention, impulsivity etc first before possibly going down the medication route again.

DS is bright, but had fallen behind due to a myriad of reasons, attention being one. It's very hard to unravel what's ASD, what's ADHD tbh. It's very interlinked (and actually his biggest obstacle at mainstream was his massive demand avoidance / tendency to explode)

thank you for your reply Marshmallow :)

How far was your DS behind, academically speaking? My DS is currently 12 months behind ARE in maths, 8 months behind in writing and 4 months behind in reading, which obviously isn't a huge amount, but he made no progress in maths from the spring to summer term, and that's despite being in intervention classes since year 1

How's your DS finding SS? I think mine is going to manage ok-ish while in primary but high school is a different ball game. where we live has, I believe a fairly decent provision for ASD children; one of the high schools DS would be in catchment for has an ASD base, and I hear good things about it from other parents of ASD children. but he'd need the EHCP, of course.

So far SS is going well - it's so lovely for me and DS for him to be getting involved with things from baking to sports, and joining his class in assembly to introduce their new topic.
None of these things he could manage in MS.
He also got 'achiever of the week' last week - it's so so refreshing to have him celebrated rather than just hear about problems all the time.
It's doing great things for his self esteem.

I don't honestly know how far behind he is - his biggest issue was / is demand avoidance so whilst cognitively he's a bright boy, he faces huge barriers internally in order to apply his brain power in a tradition school way.
He finds maths easy and was I think near the top of his year group, really through innate ability than through actively learning at school.
English is harder - his spelling is terrible because he hates to read (loves audiobooks), and finds grammar deathly boring. He's writing is also terrible. On par with a 5 year old I'd say. He struggles to 'infer' anything from a text, and can't bear to go over anything more than once (like they do to 'inbed' the learning).

Going back to your OP - I think the Ed Psych assessment will be very useful to try and identify your DS's barriers to learning, and from that you could apply for an EHCP in good time for secondary school (be prepared for the initial request to be turned down, but appealing is fairly straight forward and most no decisions get overturned either before or at appeal)

Yes the EP report would most definitely help along with your views and schools views (you would both be asked to fill in questionnaires).

We had a similar situation with DD - diagnosed on the autism spectrum and a few years later with inattentive Adhd.

I'm not sure academically how far behind my DD is. She's in bottom groups for lessons but doesn't seem to be at the bottom of those groups if that makes sense! She is on medication which I'm sure helps her focus. I think she would be bottom of the bottom groups without it.

The EP report can also help you understand you sons strengths and weaknesses in learning. In fact the report was the most useful report out of all the others ( speech, o/t etc...) we had over the years and we've had a lot. I think a lot will depend on the EP who conducts the assessments. Ours was a senior LA ed psych and she gave such an accurate description of DD I was shocked that she was able to do this after just spending an hour and a bit with DD. She wasn't allowed to make any recommendations as such but when I asked about secondary she said it could work at mainstream secondary for my DD if she had the right support as she had seen it work with other children with a similar learning profile to DD.

DD is in year 8 at mainstream now and loves it. There's excellent support e.g. extra numeracy and literacy classes instead of doing a language and clubs every lunchtime etc..

I came on to post about this tonight and found this earlier posting. DS was diagnosed ASD at 7. He is now 9 (nearly 10) and we've noticed more and more how "fidgety" he is. He really struggles to sit still and/or pay attention. I know this could be part of the ASD but as he approaches secondary school, I am starting to think it might be sensible to check out the possibility of ADD or ADHD by trialling meds. i've always steered away from this thought but really have changed my mind if it is in DS' best interests in school long term. How do we go about getting an ADHD assessment?

Bumping this as finally things are happening...

@tartanterror, did you make any inroads for your DS and assessment?

my DS had his very long-awaited assessment with the educational psychologist at school 4 months ago. I also met with the EP a couple of times, and raised my concerns about ADHD, and she promised she'd look into the best way to open things up with Camhs again (after the GP's efforts to refer him back were rejected). Turned out the best way was for her to make the referral, and using her own observations and assessment as a basis for it. So I've now received a bunch of forms for me and school to complete (same ones I think as when he was originally referred 3 years ago); Conners questionnaire for me and teachers, plus others. So I think depending on those we'll see if he qualifies for actual assessment.

The EP report we had was interesting... and now I have to find out what if anything school plans to do, and I have to get my skates on and start the EHCP thing. Yikes.

Sorry - no progress here as school weren't up for supporting. Things seemed to have settled a bit, so happy to see how things pan out for a while. Best of luck

Well, DS has "passed" the initial CAMHS screening (thought he would, his teacher's answers on the forms were pretty conclusive) and has qualified for full assessment. So goodness know how long that will take (for his ASD assessment 3 yrs ago they said 17 weeks but it was 10 months in the end). No idea if this will be any quicker but I suspect not. Hoping to have an answer in time for high school, in Sept 2020... it's like being on a very slow-moving rollercoaster.

I could almost have written this post. My son was diagnosed with ASD at almost 10 years old but his main issue was always lack of focus and concentration, he is constantly on the move but not disruptive. He has just started secondary school and the teachers advised that they saw lots of adhd traits. He runs as opposed to walks, fiddles a lot with his hands, talks a lot, easily distracted, lack of focus etc. School and I completed the assessment forms and I found out this week that he more than meets the criteria for adhd. I have a prescription for medication but haven't tried it yet.

I'm going to start the meds Saturday so I can keep a close eye on him over the holidays. Its 10mg.

BGD2012, hi. Did your son have a separate ADHD assessment? Also, was it ever mentioned when he was originally diagnosed? I truly thought ADHD would be the diagnosis for my DS three years ago, but I accepted what I was told, that his symptoms were explainable by his ASD (which was undeniable once I understood a lot of the more subtle signs). My DS has his moments of being hyperactive but I wouldn't, now, say it's a main characteristic, but definitely the inattention and inability to focus on things that are not of his own choosing. He's got the hyper-focus thing if he's keen/self-directed. Very fortunately all that concerns me is also very apparent at school, except the fidgeting. Weird. Maybe he just has learnt some classroom discipline but sitting at his desk at home, unless he's in hyperfocus on a game, he's constantly in motion, rocking on the chair mostly, or swinging off the bed...

Will you try medication? I am keen to for my DS, because it's heartbreaking to hear him so upset about school things that are all down to his inability to focus and remember things. They've been reviewing what they learnt in maths last term and he couldn't remember it, and scored 3/50 on a test. He was so so distressed, calling himself stupid, saying he will never get a job if he can't remember things. He used to be in a maths intervention group, which was smaller, but not now, the teaching is meant to differentiate, but he's more aware of his position at the bottom of the class and it's crushing for his self-esteem. He's such a bright boy, too. I will do anything to give him the chance to be on a more level playing field.

The process to initially get him diagnosed (he was 9 and the Dr was never quite sure because he seemed to have a sprinkle of everything) wasn't great and he sounds much like your son. He has also been assessed for dyspraxia but doesn't have it. He can fixate on certain conversational topics but as he is getting older this seems to be improving.

I spoke to his secondary school a couple of months ago about support he could have with exams, extra time etc. The school told me that because of his poor concentration there was no point giving him extra time but instead they would give him a prompt and a rest break. They said they were using tactics that they would use for a child with ADHD. My son is very fidgety and finds it hard to stand still. I made an appointment with his paediatrician (a new one who is superb) to explain my concerns and showed her his school reports going back 5 years (all show concerns about concentration) she gave a me a questionnaire and sent one to the school. It clearly showed he has ADHD and I now have a prescription.
I'm going to try it as I have tried everything to help with his concentration, exercise, diet, fish oil, zinc, gluten free etc. I feel now he is at secondary school he needs extra help to keep him up with his peers. I'll start on Saturday and keep a close eye on him over the holiday. (Sorry that was long).

Thank you. It is 10mg of Medikinet, we start tomorrow. I will be watching him very closely as I am apprehensive.

Thank you. I am sure I'll be in touch.

We are the opposite way round to you OP. We got an adhd diagnosis first when he was 6 and are now waiting for an ASD assessment. We tried 5 different types of medication none of which have worked. I can see PDA as well, which the controlling side is getting worse.
Good luck and hopefully it'll be a speedy process for you.

Thank you. He had huge problems swallowing the tablet.

@BGD2012 - how's your son getting on with the meds?

@BuddhaBelly - how old is your DS? I had a letter this week to say waiting list is at least 18 weeks, which takes us to DS's 10th birthday, August, pretty much. It'll be a bonus if he's seen before Christmas, but at least we should know one way or another well before high school.

@MrsMartinRohde Our DS is 9, he'll be 10 in November

CAMHS have said they can diagnose ASD from 10 themselves, so either way we're hoping to get sorted before secondary school too

He started the med on Saturday. It takes the edge off him for a bit but to be honest I’ve not noticed a huge difference in his concentration and fidgeting. No side effects, he is still eating all day like a horse and sleeps as normal. He is on 10mg of slow release which for an almost 12 year old is probably quite low.