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      Depression, Mental Health and Crisis Support   06/04/2017

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KarenT

AS and ADHD comorbid

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KarenT   

Could I have some advice from those of you whose child/ren have dual-dx of AS with ADHD? Long before J was dx?d with AS we suspected ADHD as one of our main concerns was his hyperactivity, however once he was dx?d it was assumed that this (along with his distractibility and lack of focus) was a feature of the AS so we didn?t take it further.

 

My understanding of the difference between the two conditions (from the NAS website - please correct me if I?m wrong!) is that children with ASDs tend to outgrow any hyperactivity and their social problems will become more prominent, however with ADHD present the hyperactivity continues.

 

As some of you will know, J has been making dramatic progress over the past year or so and is becoming increasingly self-aware of his AS and how it affects him. He works very hard to work around his difficulties and his behaviour has improved massively as a result. But despite all his progress the ADHD-type symptoms are still there and show no signs of abating, in fact at times they seem worse than ever. I?d have expected that if those symptoms were related to AS they?d have improved too ? would that make sense?

 

Over Feb half term a few events conspired to unsettle him, but instead of having classic-for-J autistic presentation of increased anger, argument, sensory sensitivity etc his response was very ADHD ? literally bouncing off walls and furniture, unable to stand still for a second, acting on instructions before they?re fully given, extremely impulsive and needing a great deal of support (more than usual) to manage very basic tasks like getting dressed etc.

 

For J, being calm is the key to managing his AS. When he?s settled he copes admirably but when he loses self-control all the traits leap out at you and are very obvious and hard to manage. I know that inattention, impulsivity, distractibility and difficulty processing instructions are all traits of AS but where do they become ?too big? for autism, and need an additional dx? Is J?s level of what I call ADHD characteristics just another part of his autism or is there more afoot here? It seems that there?s a hierarchy, that AS ?trumps? ADHD somehow, yet they?re two separate conditions that stand alone.

 

At our last meeting with J?s psychiatrists in October we mentioned (again) our concerns about ADHD and they agreed to assess, however as J had just started at a new school we suggested they wait a few months so that his teachers could get to know him a little better. He has settled incredibly well into the new school and I?m told that doesn?t show marked signs of ADHD, although in discussion his teacher will say that he needs to focus more on his work and he ?could produce more?, especially in literacy. He is invariably last out of school because he struggles to organize himself and gather his stuff together. Over the years he has lost countless watches and other items, still forgets to hand in homework. He?s in mainstream primary (Y4) with an ASD unit attached, though J is in permanent mainstream. He doesn?t have a statement and is at SA+.

 

It worries me that psychs seem to assume that the ?more than one environment? as stated by the DSM IV criteria should be home and school ? it?s unlikely that he?d tick many boxes at school because he?s so happy and relaxed there and the characteristics he does present seem to be low level. But if you?d see him in his piano lesson, or karate training (which has been so hard for him he?s had to have 1-1 tuition for six months, only now returning to group classes) you?d be in no doubt about his attention difficulties, hyperactivity and impulsiveness. J more than matches the criteria (IMO) for DSM IV while at home but also ticks many boxes in certain social situations. Would it be unreasonable for me to request they observe him (or at least obtain reports) outside of school as well?

 

The psychiatrists barely know him ? they haven?t seen him since he was first assessed three years ago and their only information about him comes from updates from us, less than an hour every six to eight months. They told me they don?t work with children with dual dx because of the different approaches involved. This surprises me because I?ve been told/have read that between 65 and 80% of all children with AS dx will have ADHD as a comorbid.

 

J goes to a monthly social club run by a local autism charity, specifically for boys with AS. I?ve asked for a report towards the assessment, to compare J with other boys in the same group but staff won?t commit ? they just tell me how well he?s doing lately (although in the next breath they comment on this being only since they?ve started activities out of the centre ? he was a nightmare while the club was held on the premises). Still, when dropping off and collecting I see marked differences between him and the other children, who are generally calm and placid if a little anxious in a more usual autistic way, eg asking about when staff will turn up, when the activity will start etc, whereas J is always bouncy, erratic, loud and climbing on walls and fixtures and jumping down stairs.

 

I have a very supportive but brief report from my AS support group, which gives the worker?s personal experience and awareness of J plus anecdotal accounts from knowing ?of? him for two and a half years. She?ll provide a fuller observation if it?s requested.

 

I?m concerned that J?s major behavioural improvements will lead the psychs to believe that he has no ADHD issues, since he?s been so much calmer recently, his outbursts and tantrums are increasingly rare due to his ability to self-manage.

 

I?ve read opinions about ADHD being self-controllable, in that (like AS) some children can hold it in while at school then erupt at home from the effort of doing so. (Has anyone else heard this? I can?t remember where I read it!). I know there are some autism experts who believe ADHD to be on the spectrum and have called for reclassification (which would explain the ability to control it in school).

 

I want to play down the way J copes in a school environment as it?s not typical of him, and would prefer the assessment to consider other social activities as well as/instead of school. I feel sure there will be no dx if he?s only observed in school as he?s so settled there.

 

We?re meeting with the psychs in April/May to discuss assessing for ADHD. The reason I believe the dx is important for him is to highlight his need for organizational support once he enters secondary school, as without it I believe he won?t manage very well at all. IME few teachers have been aware that this should apply to autism as well, so flagging it up would ensure he gets the support he needs. The school will need to be aware of his difficulties with homework which will no doubt increase with the volume of work .

 

Some questions:

 

Any questions I should put to the psychiatrists? Advice for the assessment?

What advice have you been given on how to work with a child with dual dx?

Is there any independent body I could speak to for advice that might carry some weight with the assessment?

Does anyone have a link to the Conners Questionnaire on the internet?

How do we address the adhd symptoms, without affecting the positive way he manages the AS issues? What are the similarities/differences in working with the two conditions?

 

Sincere apologise for such a long post - have tried editing it down but my head's not working today. Thanks for bearing with me if you've got this far.

 

Karen

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darky   

It's hard hard HARD! My girl has ADHD, although she cannot be "officially" diagnosed with ADHD. The consultant said, for a diagnosis of ADHD to be made, part of the diagnostic criteria states that ADHD cannot be diagnosed when there is a PDD present as the symptoms of ADHD subsume in the over riding diagnosis of the PDD. ADHD is only diagnosed when there is no other cause for the symptoms.

 

 

Any questions I should put to the psychiatrists? Advice for the assessment? Not sure!

 

What advice have you been given on how to work with a child with dual dx? Not much!! We have a lot of support from meds to outreach to respite which addresses the symptoms rather than the lable.

 

Is there any independent body I could speak to for advice that might carry some weight with the assessment? Maybe the NAS or ADDISS.

 

Does anyone have a link to the Conners Questionnaire on the internet? I have a copy of some of the questions I shall pm to you.

 

How do we address the adhd symptoms, without affecting the positive way he manages the AS issues? What are the similarities/differences in working with the two conditions? It is hard sometimes to work out where AS begins and ADHD ends. I am learning a lot, but it's hard to explain. A lot of the sensory processing difficulties mimick the symptoms of ADHD. A sensory aproach we have found has been the best way of dealing with it. Not to look at the child as a lable or list of symptoms, and tackle one issue at a time and take one day at a time. Don't be afraid to ask for help.

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www.mugsy.org/2007conference/

 

Have a look at Dr Angel Adams Presentation on the above. It goes through the similarities and differences between AS and ADHD.

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KarenT   
The consultant said, for a diagnosis of ADHD to be made, part of the diagnostic criteria states that ADHD cannot be diagnosed when there is a PDD present as the symptoms of ADHD subsume in the over riding diagnosis of the PDD. ADHD is only diagnosed when there is no other cause for the symptoms.

That's what confuses me. I don't understand how some children do get an additional dx of ADHD while in others the ASD takes precedence. All very confusing! I think it's one of those things that depends on who diagnoses.

 

Does anyone have a link to the Conners Questionnaire on the internet? I have a copy of some of the questions I shall pm to you.

Thanks loads for that! At first glance there seem to be some ambiguities there, but will have a closer look, I'm sure it'll be very useful.

A lot of the sensory processing difficulties mimick the symptoms of ADHD. A sensory aproach we have found has been the best way of dealing with it. Not to look at the child as a lable or list of symptoms, and tackle one issue at a time and take one day at a time. Don't be afraid to ask for help.

Yes, I'd agree with that, and that seems to be the way we're working with him already. I can't see that it'll hurt to continue as we are but I just wondered if there was anything specific we could be doing differently.

 

Thanks for your help, that's great.

 

Kazzen, thanks so much for the Powerpoint link, it looks exactly what I need, much appreciated.

 

Karen

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madme   

My son has a dx of severe adhd aspergers and dyspraxia. He is now 12 and still often v hyperactive despite being on meds. The meds however have made a world of difference to his life. He was first dx ADhd at age 6 and we were told that he had autistic traits. Once on meds we could more clearly see those traits and a couple of years later came the Aspergers dx with dyspraxia appearing in the middle. He was seen by a leading team who were v clear that without the labels he would not access the correct help. My daughter is 7 and dx Aspergers. In some ways she can be v hyper but unlike my son she can focus when she needs to. My daughter was not seen by the same team- her team specialised in ASDs. I often think that the same child would get a different label depending on who they see.

 

From what you say I think that you need to consider pushing for an assessment by a team who understand co-morbids- you may have to look beyond your local team- there are tertiary centres who specialise in more complex cases.

 

There is a book by Dianne Kennedy about the overlap between these two dx. Also Lisa Blakemore Browns book is v good.

 

There is a good website called Adders where some parents have children with co-morbids.

 

Good luck

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KarenT   
I often think that the same child would get a different label depending on who they see.

Totally agree with that. At one time it was common for AS children to be first mis-diagnosed with ADHD and then treated medically, so I wonder to what extend medication helped bring out the AS symptoms for those children?

From what you say I think that you need to consider pushing for an assessment by a team who understand co-morbids- you may have to look beyond your local team- there are tertiary centres who specialise in more complex cases.

That would make sense. I've just run through the Powerpoint presentation that Kazzen posted up and J doesn't fit into either typical category, he's a definite mix of both.

There is a book by Dianne Kennedy about the overlap between these two dx. Also Lisa Blakemore Browns book is v good.

There is a good website called Adders where some parents have children with co-morbids.

Thanks, will look out for those books and have registered with Adders tonight. Thanks for your help.

 

Karen

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Hey Karen,

we're in the same boat, bailing madly but not really clearing away the muddy waters!! ;)

My Cal had a dx of AS and ADHD, but for the longest time the psych wouldn't confirm that this was his actual dx. I could see her point that she didn't want to stick him with a label (or start him on meds for that matter!) until she was sure. And of course, as is so very common, the reason that she couldn't dx was that the ADHD behaviours (now this ain't a quote, but can't call to mind her actual words!) was that if a child did have AS then the other behaviours shouldn't be happening. Likewise, with regards to a dx of AS, the ADHD behaviours made it hard to confirm that DX!! :wacko:

The mind boggles!

All too often, non-specialists are looking for round pegs to fit their round hole DX criteria-and I can't blame our psych, she really has been super but if there were more specialists, then our kids would hopefully receive more appropriate treatment, and much more quickly too. In a perfect world, huh?

Thing is, we've found that C is more likely to present his horrendous ADHD behaviours in school as opposed to home. The noise levels and having to adhere to rules is the cause of this, I think, coupled with the fact that C really aint a 'people person'! He does want to make friends but usually the other kids' habits make it immpossible for him to achieve- things that I wouldn't notice drive him batty!

I will never push people to try meds with kids, but our psych got to the stage that she said, 'Cals so unhappy, I feel we need to exhaust all avenues. We know hes definitely got AS, I'm not positive about the ADHD but I think at this point we should try medication. If it helps, fantastic, and we know he has ADHD too, if it doesn't work then we take him back off and know that ADHD isn't an issue.'

(AGAIN, kinda not a perfect quote there! )

Long n short, it did work and Cals progress has just zoomed along.He sat his first ever ed.assessment in January and has a reading age of almost 15- GOBSMACKED!

A thought occurs-would your psych agree to watch footage of J in places other than school, so that he can witness some of his impulsive behaviours? Also, they should agree to do an observation in the home, it's not an unreasonable request and often provides farmore insight than school visits- defenses are down, the child is in the most secure and comfortable place he could be, so for some, this is when they unleash the most potent of their ADHD /AS behaviours.

We also had the same experience as madme, Cals AS traits are much clearer now (p'raps its just that the lessening of ADHD behaviours lets us see them?) but he does seem much happier.

Wish I could be of more help, but it helps to know you're not alone at least.

Esther x

Edited by pookie170

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clair   

Oh my !! What you have described Madme is the same as what my son is experiencing. Diagnosis of Adhd first, then put on medication which should have completely resolved the problem, only now school have said they want a reassessment of his diagnosis and statement as the asd traits that he had are getting far worse. They have told me what they think (aspergers) and that they don't think that he is going to cope in mainstream school and told me to write to LEA as well as themselves to ask for a professionals meeting.

 

The funny thing that happened tonight is that I had to go to a meeting for year fives (with a statement) for transition to secondary school. There was the lady I had to write to at the LEA, the new educational psychologist, the parent partnership woman, and the labbs lady that knows him from school, so I set to work.

 

By the end of the meeting the ed Psych said that he would see him by the end of the week as he is based in an office at my son's school. He said he had not met my son but the minute the labbs lady said that he had seen him in the corridor on many occassions, and by the time my sister who is a speech therapist had finished with him, he couldn't wait to get involved. I think by saying how utterly exhausted I was at the whole fighting process and the fact that I was probably going to have to home school him; it worked a treat.

 

Sorry to jump in on this thread but I really needed to tell someone !! :tearful:

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darky   

Reading this, just to add, our experience was similar to others in that, we initially thought ADHD was the problem as the hyperactive impulsive behaviour hid the intensity of the AS traits, although she still had them but to a lesser degree. The consultant told us once medicated the AS traits are more noticable, and that was certainly the case with our girl. Once she was able to focus, she was able to focus on her routines, fears and phobia's even more. The difficulties with communication came to the forefront as well, because pre meds, she was unable to communicate anything much at all, it was all gobbledegook!

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JsMum   

What we have found with J is that when they have a co mormid its very difficult to get them to fit in just one diagnosis, so for us J has bits from each comorbidity, so he has bits from dyslexia, bits from ADHD, a bit from the ODD, and bits from the ASDs, but not totally fitting in just one form, I know that many do believe that ADHD is part of the spectrum and many of the symptoms to diagnose ADHD came from the umberalla of an ASD.

 

J has many autistic traits and many ADHD traits, that actually masked a lot of ASD signs in the early days as his behaviour was in your face as he is growing older his social and interaction is becoming more noticable but as he becomes more Anxious his behaviour becomes more hyper or defiant to aviod or disract his own fears.

 

AS and ADHD are becoming more recognised together but schools and other similair social settings are totally still not totally understanding this complex special need and so many will continue to mismanage our children making the symptoms worse, feeding into their frustration and anger.

 

I can recommend that you attend a local ADHD support group and share your concerns some meetings they have specialist in ADHD and management which usually is medication and a diagnosis to support school management.

 

Some books on ADHD may assist your further research, dr greens book is a good book and has further reading on Aspergers Syndrome.

 

Addiss have further information on ADHD and AS as many parents with children with ADHD have AS or ADHD as a comorbid, I dont know of any child with ADHD and no autistic triats or ASD diagnosis as many have a co morbid especially Dyslexia with ADHD and lots more with ADHD,Dyslexia and AS.

 

There is many books on ADHD and organising stratagies and I am sure these could be used wether he has a diagnosis or not, but I understand you want it identifying for school and statementing issues.

 

I would continue with noting his behaviour and keeping a diary and just keep sharing your concerns to the possibility that your son could have AS and ADHD as it is getting more common now that children are been diagnosed late into there teens because people had misconceptions of ADHD just as they do with Autism.

 

JsMum

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KarenT   

Thanks for that Jsmum. What you say makes a great deal of sense and sounds very like my J! I thought the same thing when looking at the presentation on Kazzan's link - that J doesn't fall specifically into any one diagnosis, he's a real mixed bag of about 50/50 ADHD and AS.

 

J's exactly the same with his behaviours becoming more noticeable as he gets anxious and unsettled. My main worry (from a diagnostic point of view) is that he's made such incredible progress lately that he presents as quite controlled and calm a lot of the time (you should have seen him this morning - 'the perfect child'), but the issues are still there underlying and it doesn't take a lot to unsettle him. I know for sure that he will struggle with the social demands of secondary school and his negative behaviours will be more prominent - ideally I'd like to prevent that by having his attention difficulties flagged up so that strategies can be in place before the problems arise. Unfortunately 'the system' seems to prefer our children to break into pieces before they start putting them back together again. I'd prefer it if J could be made stronger so he doesn't fall apart in the first place.

 

I've already been to our ADHD support group, met some very useful people including J's new piano teacher who works with a lot of children with multiple behaviour disorders. She's ace! Her mum's a psychiatrist in the same field so she'll prove very useful to know!

 

Thanks again for your help, much appreciated.

 

Karen

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Just over a year ago, the NHS introduced me to the term "comorbidity".

 

In July 2014, my doctor referred to a specialist to discuss the possibility that I might have ADHD. At our first appointment, the ADHD specialist said he was "pretty sure" that I was on the autism spectrum. As well as diagnosing me with ADHD, he decided to refer me for an ASD (autism spectrum disorder) assessment. Following the assessment, I was also diagnosed as being on the autism spectrum.

 

I had no idea that this was medically possible.

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Mihaela   

Yes, it's quite common to be diagnosed with both. It's possible that you may have been misdiagnosed the first time with ADHD, and that they're not prepared to admit it. That can happen too. If you think you have ADHD,then you probably have. I think I have slight ADD (undiagnosed) along with my autism.

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Yes, it's quite common to be diagnosed with both. It's possible that you may have been misdiagnosed the first time with ADHD, and that they're not prepared to admit it. That can happen too. If you think you have ADHD,then you probably have. I think I have slight ADD (undiagnosed) along with my autism.

 

Occasionally, this thought also crosses my mind, too: that the ADHD may be a misdiagnosis. Prior to being diagnosed with ADHD, I had the idea that I might have ADHD, but not ASD.

 

Following the ADHD diagnosis, I've been taking prescription drugs which do provide some calm and focus. So I think I'll defer to the doctor's decision with the ADHD diagnosis. I've been to a few support group meetings, where I've met others who are also diagnosed with ADHD and have more severe symptoms. I think mine are comparatively mild.

 

My experience of the NHS has been good. My GP has got me to see a psychologist. Now that the NHS have actually diagnosed me with both ASD and ADHD, the psychologist is now seeing if we can arrange a few sessions with me around this dual diagnoses.

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