Assessment for ADHD on child with ASD-any experience?

[MrsBobDylan]

I don't know how I feel about this but during a routine appointment at ds' sn school the pead asked me if he always moved as much and about his anger outbursts and poor attention span.

I didn't give it much thought but she has sent three ADHD questionnaires through the post and I've come to realise that she thinks he might have it.

He is 6 and we really struggle to control his explosive anger. We have also been surprised at his lack of progress at school - we thought he might have learnt to count or recognise letters by now but his progress has been very static. Our family life is very limited because of DS, he is a liability when out and even in his buggy will get angry and try to kick anything or anyone who comes near, while shouting obscenities and screaming.

I am surprised how I feel about the ADHD possibility. On one hand I think that if he has it, we could possibly tackle it and make his and our lives easier, on the other hand, I find it depressing that he could have ASD and ADHD and from the little I've read about medications, they seem like they've got lots of side effects which concerns me.

Sorry, this is a badly written post. I feel like it's likely DS does have ADHD and it just pisses me off and worries me in equal measure. I know that sounds odd but I am struggling with coming to terms with his disability and it just feels like another knock.

Anyone experienced similar and how did it turn our for you and you dc?

[2boysnamedR]

It's just been suggested by OT that ds may have add / ADHD. My sons pead wouldn't entertain it.

Like you I was a bit shocked - even though he's a live wire. I just thought it was part of asd.

Not sure what I will do next. Possibly nothing as not had great experience going up against the NHS once they block things.

Possibly might go private when he is older ( only three now),

In the meantime I'm trying to Chanel his energy and failing.

It all gets a muddy after a while. He is knocking up more conditions than I cope with. ADHD seems like another Dx I could live without right now tbh.

But some people swear by medication. Seems like you have to try a few to get a good balance.

He has his placement panel coming up and I don't have head space. To even think about that.

[MrsBobDylan]

Is that for a school place 2boysnamedR? It's stressful isn't it?

I suppose the medication might be a good thing, especially if it helps him focus more and calms some of his wilder behaviours.

I just feel like we are drifting further and further from the hope that DS will 'be ok' as he grows older. Each year that passes seems to bring new anti social behaviours and struggles, while there is still this sweet little boy waiting for his chance to live life but dominated by his disability. If that makes any sense!

[2boysnamedR]

He was refered to OT by his pead and I chased it on for his school panel.

I try not to think my boys are wrapped up by their disabilty / conditions any more. I used to but now I think it's part of them. There's no little person trying to escape. They are as they was meant to be.

Not that it doesn't hurt or make me sad. I'm both. But it makes the waiting for a miricle stop. Because it's easy to stop enjoying the moment and loose time waiting for something that's not likely to be.

Every new diagnosis hurts.

But on a positive note my older boy is nothing like the child he was four years ago. He is still very qerky to me but any stranger who meets him would never know he has any diagnosis. It takes a while to see it to a untrained eye.

You just never know what sound the corner. Don't stop hoping for the best

[AdriftOnMemoryBliss]

my 9yo ds has a complex diagnosis, but he has both ASD and ADHD.

Both were done via CAHMs at the same time, the ASD first, then the ADHD was looked into along side the school and their input, all in the last 3 months.

Currently the only medication he's on is melatonin to try and help with his sleep, i've refused all other medication as i don't think he needs it with the right support in place at school.

Is there anything specific you need to know? i work better answering direct questions, lol.

[2boysnamedR]

Can I ask? My toddler is a sound sleeper. He can take hours to switch off some nights but he never wakes in the night. I have always presumed that excludes ADHD? I asked his pead but she said she doesn't Dx till six and that might up to 12 soon ( don't think that's in the nice guidelines but not checked).

Does ADHD always mean broken sleep?

Ds is always knack wring himself out ( and me just watching him)

[AdriftOnMemoryBliss]

I know the broken sleep is quite a 'thing' with ASD, i'm not so sure if its ADHD related too.

DS has NEVER slept through, he takes a good 2hrs to settle, and then is up and down all night, some nights he wakes at 12.30 and won't sleep again until 5 where he might get a couple of hours, other nights he will wake a couple of times and then sleep until 3.30 and not go back to sleep at all.

We get higher rate DLA because his sleep disorder is so significant, i run on an average 3hrs sleep a night, i usually go back to bed one they're at school for a couple of hours just so i can function!

i'm told by CAMHs that its because he doesn't produce enough melatonin, which is the hormone we make about 30 mins or so before sleep that helps us actually fall asleep. The meds have stopped some of this 2-3hr in/out of bed nonsense we get between 8 and 11pm, but it doesn't keep him asleep, so once he wakes, i'm still stuck with the amazing non sleeping child who can't stay in his room and be quiet for love nor money! now THAT is the ADHD, lol!

[ouryve]

DS1 has both lots of letters after his name - diagnosed with ASD "with associated hyperactivity" age 3 and ADHD age 6.

To be honest, we were ready for it and had asked for the evaluation, ourselves. Evenings were sheer hell and there was only so much that heavy blankets, squeezes and opportunities to bounce could achieve. Once he was being treated, life improved for us all in a lot of ways. The rolling on the floor screaming stopped, for a start - he'd just roll on the floor ranting, instead! Doesn't sound much better, but was a sign that his communication was the first thing to improve.

[Msqueen33]

My dd has both asd and ADHD. She's had 1:1 since she started school. She's in her second year and is about to turn six. Her hyperactivity affects her a lot. She can't sit still on a chair, is constantly moving and jumping. It's almost like she has physical tics. We have tried all kinds of behavioural intervention but have started to trial medication. It's taking the edge off her hyperactivity. She still has an explosive temper which we are working on. But until we sort the hyperactivity the behavioural stuff wasn't working. It's horrible having more letters after her name. The older she gets the more complicated things become. She's not typically autistic so is quite complicated.

[dietcokeandwine]

I have an 11yo who was DXed with ASD (Aspergers) at almost 5 and then, much later, with the 'inattentive' variety of ADHD (ie attention deficit but not hyperactive) shortly after he turned 10.

We had previously assumed that all his attention deficit difficulties were purely down to the ASD, so initially it was a bit of a shock to be going down the ADHD assessment route.

With hindsight, though, I'm glad we did. DS has responded well to a combination of medication and various coping strategies and is doing well at school. Managing him at home is more challenging - we have two much younger DC aged 6 and 3 who are NT, very socially confident, chatty and outgoing - and DS1 really really struggles with them both. We've yet to find a happy solution to that one. But overall the ADHD DX has been positive for DS because it has helped him understand why he finds certain things hard.

[MrsBobDylan]

Sorry, just caught up with this thread...many thanks for the responses.

The paed has noted emotional disregulation (this is the thing which we struggle with the most), lack of concentration and being 'fidgety'. I had always thought he was a bit different to his classmates, most of whom have asd. For example, ds often wants to communicate but can't follow a question or pull his attention away from whatever it is he's doing. He is also much angrier than his classmates and goes ballistic at tiny things. The paed lightly touched the back of his head with the measuring thing and I had to block him before he 'got' to her. He was swearing at her so angry because she had 'hit' him.

He's sat next to me now bouncing up and down on the sofa. After 10 bounces or so, he's flinging his legs around then rolling over etc...he hasn't been still for a moment. Now it's been pointed out, I can't believe I've never noticed how much he moves!

Does this sound familiar? I have to ask him multiple times to get his attention for anything. Even for things he likes.

[ouryve]

Definitely rings a bell. We use to call DS1 Taz!

Even medicated and with the benefit of maturity, he's like Tigger, much of the time. And we catch him in the weirdest of positions. He seems to spend a lot of time lying on the sofa, folded up, with his feet above/behind his head, at the moment. (good grief, don't google that one without safe search on!)

[MrsBobDylan]

DS does very odd positions too-he loves to be upside down and likes any position which puts pressure on different parts of his body.He went through a phase of climbing into one of those laundry bags and zipping himself in or climbing into a box which was under his bed just so he could wriggle around in a tight space. My Dad seriously wanted to fix one of those key finder things onto him as we were scared we'd loose him!

ouryve did you find medication helped?

[ouryve]

It's helped immensely. He can't really function without it.

If you haven't already, look up sensory processing. The upside-down-ness and craving for pressure really is a thing in kids who are under-responsive to normal stimuli.

[MrsBobDylan]

That's helpful, thanks. I think we would be open to medication if it was suggested, so it's useful to know it really can help. It's just another step into the unknown I suppose.

[Nadia1976]

Hi

I just read your message and my daughter was just diagnosed today with asd. adhd was already done a couple of month ago. I am a little bit stressed and overwhelmed. we do not want the meds but not sure what else is available .

[Nadia1976]

my daughter is the same . she has 1 to 1 support at school ...and doing well . no outburst ...more meltdowns

[milothemonkey]

Just a thought but have you looked in primitive/retained reflex therapies. Some OTs check for retained reflexes. DS has asd and had anxiety/sensory issues. It's helped massively. I dont remember the ladt time he was aggressive towards me or had a meltdown. I learned about it on MN and there are loads of threads.
Sounds like the weird positions may be sensory seeking. Has he been assessed for SPD?