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Post by conceptuallycurious on Dec 25, 2015 1:10:13 GMT
I was diagnosed as ASD in August. In addition to all the social and rigidity symptoms, I also have many executive function difficulties and sensory issues. These include hyposensitivities to proprioception and vestibular senses. These mean that I'm constantly restless. It get an itchy feeling all over my body that builds up to a burning feeling if I stay still too long. It takes a lot of moving to get rid of it at all.
I struggle with staying in one place long enough to cook safely and with sitting down to write essays (I'm at university).
I meet most of the inattentive items and many of the hyperactivity items, however. Indeed, I think I meet threshold for combined ADHD. Indeed, my difficulties in overlapping areas are documented.
I was advised to seek an in-depth sensory assessment but this isn't funded by the NHS... so I asked my GP about medication for ADHD and she seemed pretty against it but said she'd ask CMHT for their advice.
My GP says stimulants would help anyone improve focus, but that she thinks other strategies would be better. (Naturally, she has no advice herself and nowhere to refer me to.) She also thinks the side effects would be more trouble than they're worth but I'm really struggling. I just don't know what to do. I have a chew necklace, a weighted jacket, a weighted neck thing, ear defenders and a balance cushion. They do help, but it's just not enough for things like writing when I can't just get up and run around all the time.
Has anyone been given medication for ADHD with an ASD diagnosis alone?
Anyone who was diagnosed with ASD and later ADHD?
Any advice?
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Post by tessaract on Dec 26, 2015 15:55:41 GMT
Hmm a lot of the stuff you just described has just been recommended for me like the weighted cushion and ear defenders. I also have incredible urges to just jump up and move around and I have been diagnosed as ADD and ASD Aspergers.
Your doc may not want to recommend ADD meds as apparently they are not ideal when it comes to sensory issues and dont work well together.
It may depend on whether what they call primary diagnosis and secondary diagnosis. Is your primary diagnosis ASD? Then they will probably want to treat that first.
The word you used were the same words that were just described to me a few days ago and its the first time I ever heard of them.
Hopefully we can help each other wade through these overlapping complicated treatments and opinions of professionals. Anything you want to pick my brain over please do.
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Post by contrarymary on Dec 26, 2015 20:23:09 GMT
hi conceptuallycurious and welcome to the forum GPs won't normally prescribe for adhd unless it has been diagnosed, and the process for assessing adults for ADHD often varies depending on what services are available where you live. there should be a route for your GP to refer you to get input from trained and experienced specialists. it may help if you can get a little more info together before going back to the GP and requesting assessment. there's lots of v helpful info on the FAQ page of the main AADD website - inc how to prep for GP appt - and loads more sprinkled about on this forum. there's a fair amount of overlap between asd / adhd, and quite a few people on the forum have been assessed as having both, or as having adhd plus traits of autism, or started out with one and been switched to the other. if you've got any particular questions ask away. and if you want to say whereabouts you live in there may be someone with experience of what's available in the area good luck
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Post by JJ on Dec 27, 2015 5:18:14 GMT
GP sounds like she knows nothing.
Adhd meds do help with sensory issues - mine are reduced massively with my ADHD meds
ADHD meds don't *only* help you focus, they affect so much more than that.
Sensory processing disorder and Adhd share many symptoms and are commonly comorbid.
1/3 people with asd have ADHD and vice versa
Im on my phone typing and can't scroll back to see what else sounded wrong, but your gp isn't a specialist and isn't qualified to tell you whether you have ADHD or not and has certainly shown her ignorance in her appraisal of ADHD meds. You need a specialist assessment.
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Post by conceptuallycurious on Dec 31, 2015 12:58:45 GMT
Sorry it's taken so long to reply between Christmas festivities and an essay I had due, I haven't had much time recently.
I'm struggling to write out a full answer at the moment as I'm still recovering from my essay (I ended up having to stay up over 29 hours to get it done and then realised it was too late to go to bed. It's the next day now and I've had a sleep but mentally I'm still catching up.), but would like to thank you for your replies.
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Post by conceptuallycurious on Jan 5, 2016 15:23:08 GMT
My GP has said she's not a specialist and offered to refer me (I wanted her to check whether there was any chance of a prescription without a full diagnostic assessment of ADHD through my documented ASD problems). She remarked that it's difficult to identify whether issues are ASD or ADHD. She seemed surprised that I might want another referral so soon after my last one. I hope I don't get switched from one to the other, though. Wish I'd just asked at my assessment.
I will definitely have a look through the links for GPs. I know that it says to contact GPs after a week, but given that it's been over Christmas I'm not sure how long to leave it.
One thing she highlighted is that I currently take Quetiapine (an antipsychotic) and stimulant medications have rather an opposite function. I have heard of antipsychotics affecting ADHD (even though the WHO guidelines say not to), but as I was put on them because SSRIs put me in a high mood (well, I experienced a high mood three weeks into taking them that lasted a further three weeks) I reckon the odds are slim. They don't look much better for non-stimulants either.
I tried my nephew's neck massager (it had a tie to keep it on the neck, rather than the ones that look like travel cushions) and that was nice. Though noisy enough that I'd wear ear defenders with it. Once I have more space (after my degree ends, agh) I think I'm going to order a massage chair to see if that helps any.
Not sure what to do in the meantime.
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Post by conceptuallycurious on Jan 25, 2016 16:14:04 GMT
Hi everyone - just an update.
I've got an appointment to see AMHS on Friday so I will discuss medication with them then. I'm not too hopeful, if I'm honest but will take along information from this forum to help me. Shame that any changes will be exactly as I go back to university and at a really important time for my dissertation experiments.
I'm really upset that my computer with all the information I've spent nearly a year collating (as I'm rubbish at writing in a single session) for PIP/ASD diagnosis/things to do with ADHD has stopped working. It's the charger port that's broken, so if I could just recharge my battery elsewhere I could get in. Probably not before Friday though.
If they say no, I'll ask for a proper ADHD referral.
I've also found a place that will do an adult sensory assessment - but at £450 (and then £150 for follow up appointments) it costs a pretty penny. If I hadn't had to replace my laptop (it's had endless problems, but the files were still accessible) I could have afforded it.
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Post by conceptuallycurious on Jan 25, 2016 16:18:55 GMT
Also, I was asked to get blood tests done especially for the appointment. Thankfully my surgery could get me an appointment for today (Monday) since AMHT's letter didn't arrive at my place until Friday! I'd had some of them a couple of months ago, so I didn't need them again.
I forgot to take the letter with me and then didn't mention it to the nurse. She had some sort of sticker pad with names on and only selected some - so I hope she had the right tests.
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Post by shinkansen on Jan 25, 2016 18:07:38 GMT
Has anyone been given medication for ADHD with an ASD diagnosis alone? Anyone who was diagnosed with ASD and later ADHD? Any advice? I have both ADHD and ASD. Similar situation, but not quite the same. I was first diagnosed with ADHD (combined type) and then just over a year later, diagnosed with ASD. Both diagnoses were done at the same NHS London hospital by the same group of doctors. As soon as I was diagnosed with ADHD, I was put onto medication. I started with Ritalin, which I didn't like, and then tried Concerta XL, which I preferred. For the last year, I've been taking Concerta XL 72 mg, which is a slow release methylphenidate. Once my ADHD diagnosis report was sent to my own GP, he carried on prescribing the ADHD medication. There has been some complicating factors. As well as the prescribing ADHD medication, I now also take the anti-psychotic medication, Olanzapine 5mg and the anti depressant Mirtzapine 30 mg. The Concerta 72 mg does help. It provides calm and focus and there's a noticeable increase in work productivity. I've had some problems sticking to the dose and have occasionally skipped or increased the dose. I've found that I build up a tolerances, so I have period days with the Concerta to reset the tolerance clock.
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Post by yehok on Jan 26, 2016 1:29:05 GMT
I always nod and smile when doctors say 'stims would help anyone focus' but it simply isn't true.
Two of mates have tried my meds.
Two hours in, one of them looked like he hadn't slept for a week. The other one told me he couldn't concentrate on anything for hours.
I long for the day when I don't need tablets to do what everyone else takes for granted. Do they really think we're trying to get off our tits or something?
They have no idea!
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Post by shinkansen on Jan 26, 2016 11:45:12 GMT
I always nod and smile when doctors say 'stims would help anyone focus' but it simply isn't true. Two of mates have tried my meds. Two hours in, one of them looked like he hadn't slept for a week. The other one told me he couldn't concentrate on anything for hours. I long for the day when I don't need tablets to do what everyone else takes for granted. Do they really think we're trying to get off our tits or something? They have no idea! Good point. And excellent post. Periodically, I wonder what would happen if some friends tried my ADHD pills, too. But your post provides an answer.
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Post by Deleted on Jan 26, 2016 13:48:50 GMT
It depends how much you take!
When we start titrating it's usually a pretty small dose and even that can feel daunting (if you haven't been an abuser of 'recreational' drugs).
So anyone taking some meds, who isn't used to them, should notice them more.
I think my meds are pretty benign, and low dose, but I wouldn't let a complete novice take that amount. But if you compare against the amount of street drugs I used to take (taking into account that they would probably not be pure) it's still a fairly small dose.
We inhabit a 'Goldilocks' zone of too much for some, not enough for abusers.
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Post by conceptuallycurious on Jan 29, 2016 13:30:26 GMT
Thanks for all your thoughts - it does look like they will only prescribe ADHD meds if I do have ADHD, though I suspect my previous high mood will be a problem. I guess it makes sense if it effects non-ADHDers badly or is not really helpful at all. Update on today: Thankfully... whoever it was I'm sure and a nurse were very helpful. The appointment lasted an hour and my wife came for most of it (she had to go to work just before it ended). They've given me the DIVA to take home, though I'm unsure how to get a parent report short of typing it up! My dad lives hours away and doesn't have printer and much less a scanner (I could scan it to pdf, but I doubt he has software to write on it). They advise I send it back within two weeks, they will then have a multidisciplinary meeting and after that invite me back. The problem for me is that although I clearly have problems now it's hard to prove I had them. That and I'm a 'complex' case - what with ASD and past MH problems. All in all, they anticipate the process taking 'a matter of weeks' not months.
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Post by shinkansen on Feb 10, 2016 22:10:21 GMT
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Post by annie on Feb 11, 2016 10:46:53 GMT
Thanks very much for this link. I believe there is quite a lot of people who are given the ADHD dx but fail to have the ASD identified. Somewhere, I read about a piece of work done by the Wakefield Adult ADHD clinic which found a lot of young people, on being transfered to the Adult clinic, had not had their ASD condition recognised in childhood.
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Post by contrarymary on Feb 11, 2016 14:56:23 GMT
there's loads of research on the links, overlap and comorbidity of asd & adhd, some of which has already been flagged up on the forum as i found when i did a search for it yesterday. there were some particularly good articles linked in some of the threads. most recent conversations are: this one this two this three this fourif you run a forum search with aspergers or asd in the first search box, it comes up with about 50 or so previous threads on variations on this theme - they are like goldmine meets groundhog day
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Post by shinkansen on Feb 11, 2016 17:48:10 GMT
It's more common than you think !
Mind you, it didn't feel like it when the doctor said I could have both ADHD and be on the autism spectrum.
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Post by conceptuallycurious on Mar 11, 2016 15:22:14 GMT
Thank you for being supportive, and for all the links people have provided.
It feels like it's been AGES, but my next appointment is set for Monday (CMHT have a propensity for short notice here!). Not sure if they will be doing cognitive testing as my last letter said maybe they would, pending discussion with their team.
I've given photocopies of previous letters, my questionnaire and familial reports - so fingers crossed it will be a helpful assessment rather than just 'will book you in for cognitive testing but there's no appointments for 8 months'.
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Post by contrarymary on Mar 11, 2016 22:26:38 GMT
good luck on monday
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Post by conceptuallycurious on Jul 26, 2016 22:45:03 GMT
Oh my, I'd meant to update but never did. The psychiatrist was much more difficult without my wife there. She said that ASD + ADHD were rare and she'd never seen it - also seemed dubious about the change in age of symptoms between the DSM IV and V.
She's been insisting I'm anxious and that my symptoms are a sign of Anxiety + ASD even though my problems persist regardless of whether I'm anxious. She also completely refused to take into account my sensory difficulties (which were the reason put on my ASD report for my ADHD-like difficulties) even when I sent a letter to clarify.
In any case, she's doubtful that I have ADHD because my parent reports don't match up but was willing to acknowledge that there may be errors because I wasn't that close to my dad or grandmother owing to family problems (and I haven't spoken to my mum in years). It was at least supported by my dad having put ?' and even 'don't know' next to some of the questions.
So, I was referred to psychometric testing and have been on the waiting list. Appointment is on 2nd August so not long now. I guess we'll see how it goes.
I'm expecting that there will be some sort of difference between my verbal and performance scores (if it's the WAIS) as I used the WISC as part of my dissertation earlier this year and did the performance side for fun (I'd already administered the verbal side so would have cheated the test if I'd done that), obviously not with myself as the testing. And clearly not a professional testing. In any case, I scored low average for 17 year olds (16 years 11 months if you're being pedantic) on performance but have previously scored very high on verbal tests. This would match my lived experience with similar tasks but it remains to be seen in an actual test. Same thing could happen from ASD so not sure what the outcome will be but am looking forward to having a more comprehensive view of my abilities.
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Post by vagueandrandom on Jul 27, 2016 11:51:13 GMT
conceptuallycurious . . .it continues to amaze me the ignorance of some MH professionals! How can the psych say that ASD + ADHD is rare? Since being dx a year ago, I've probably only met 10 people with ADHD and the majority of them have ASD traits . .a couple of people at the support group that I go to are predominantly ASD with ADHD. . . I would argue that it is common, not rare for both to coexist. I am increasingly of the opinion that ASD and ADHD are all part of the same spectrum. I know this doesn't help you, but you've got to stand your ground.
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Post by vagueandrandom on Jul 27, 2016 12:05:08 GMT
And my latest hobby horse is the way that ADHD is treated within the MH system.
A lot of psychiatrists, including my current one, don't know too much about ADHD,
but can recognise and treat symptoms of mental illness without knowing that they
can be part of the ADHD. One example is the mood questionnaire that you fill in when
having counselling for depression . .a lot of the questions describe ADHD traits, which
are constant, regardless of mood ie 'inability to concentrate' 'problems sleeping' 'eating too
much, or too little' 'being driven by a motor or moving slowly' . . .there are others. .
According to these, I am always very depressed. .when I know that I'm not.
So . .anxiety . .of course! The psych knows about that!
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Post by conceptuallycurious on Jul 28, 2016 15:49:58 GMT
Yeah, I think most of the reason my previous psychologist didn't write about my severe problems with concentration and being fidgety was down to the MH problems. (Let's face it, if you're writing about the impact of sexual abuse on a child, concerns about (then planned) court proceedings and suicidal ideation, it makes sense that you wouldn't waste your time writing about not being able to concentrate. Plus, such symptoms - as you mentioned - are already explained by depression and anxiety.
Further, I would argue there are some subtle signs in there such as: - my CHOICE assessment from CAMHS (the one they do on first meeting) about my reasons for seeking therapy literally says 'she reports that she is fidgety' on the first page. It even goes into some more detail about it a few pages in. The whole thing is about whole thing is about what I was saying, it was right before I disclosed that I was being abused so wasn't hijacked by that. - a letter saying that I was put on anti-psychotics to manage mood fluctuation (I tried anti-depressants but they put me in a high mood, however bipolar was ruled out). - a letter advising my school to give me rest breaks for poor concentration (owing to too many exams scheduled on one day) - a letter from my psychiatrist advising my GP that I'd moved from taking medication twice a day to once a day because I kept forgetting my morning dose - a letter advising my university that they should monitor me at university to make sure that I manage my course demands and also that around times of stress I should be allowed deadline extensions - another letter stating that in a particular session I had a 'more relaxed presentation' (I remember this and it was because I was fidgeting less than usual - my psychiatrist remark on it in the session) and doing better with managing my course load. It was put down to my medication at the time. In order for those things to have improved, it is only logical that they were observed in the first place. - a letter from my audiology department noting that I'm inclined to forget to eat
So it's pretty galling to read that CAMHS never observed any signs.
I do understand that most things weren't written about but the fact she hasn't mentioned much sensory difficulties is much the same. Does it mean I've magically lost the sensory difficulties I was diagnosed with a year ago? No. It means that she didn't consider it poignant to the letter.
Much easier for everything to be anxiety. Grr.
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Post by conceptuallycurious on Jul 28, 2016 16:04:12 GMT
Also, she seemed dubious about the expansion of the DSM 5 in general. It seems she falls into the belief camp of hierarchical diagnosis - that is, ASD supersedes ADHD. Plus she mentioned that most people grow out of the ADHD and that those who don't typically have greater inattentive symptoms that hyperactive but that didn't seem the case with me.
She said that sometimes the symptoms of ADHD become noticeable when you start university owing to lack of structure but since I'd grown up with little structure that couldn't be the case for me. (Which doesn't entirely make sense because it's not like I was an unschooled bohemian - I still attended highly structured education with a 1:1 for my hearing.) She also seems skeptical about my lack of SEN notes or early school reports - I got rid of the SEN statement documents when I left school thinking I wouldn't need them and since I don't speak to my mother who has all my early documentation... there's bugger all I can do.
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Post by contrarymary on Jul 28, 2016 22:52:56 GMT
hi conceptuallycurious good to hear from you, tho sorry things are so slow and challenging it sounds as tho the current psychiatrist is not v familiar with asd/adhd overlaps and comorbidities, and indeed not particularly familiar with adhd esp adult presentation. there do seem to be a swathe of psychs who think it is all a pharmaceutical con/over-diagnosed/exaggerated. which makes life difficult. is the current psych the same one who diagnosed asd, or another one? i'm wondering if this is a specialist or a general psych that you've seen most recently, and whether you have specialist services in your area. i'm going to stop wondering, wish you good luck on 2 august (woo hoo - next week already) and go to bed = promised myself an early night and clearly not got there, yet. let us know how you go
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Post by conceptuallycurious on Aug 1, 2016 15:31:47 GMT
I managed to get a tertiary care assessment for ADHD. This one is a 'specialty' psychiatrist at my local mental health hospital's outpatient clinic, although the psychometric testing is being done at our other local hospital (the one I've had some extremely questionable ENT and audiology appointments at).
She did seem especially tetchy about giving medication out to the wrong people and how a diagnosis could ruin my chances of driving (I tried learning to drive and decided I was too dangerous because I don't process oncoming cars very well).
I'm being referred back to the psychiatrist after my psychometric testing for her to conclude on whether I do or don't have it. Do you think I should take copies of the letters I found examples in to the psychometric testing or not? They said to bring someone to discuss my history with.
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Post by vagueandrandom on Aug 1, 2016 17:51:57 GMT
Hi again It's looking slightly more hopeful. . I know that assessment is different depending on where you are, but I didn't do any psychometric tests . . Any extra 'evidence' is worth taking. Do you have anyone to take with you who has known you for a long time? If there is, but they can't come with you, you could ask if they could be free to talk on the phone during your appointment. . my mum did this in my ASD assessment. If you have any school reports, they can also be helpful. A lot of medics are tetchy about meds. . if you end up seeing a specialist, they'll discuss options with you without the anti-med attitude.
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Post by conceptuallycurious on Aug 2, 2016 16:29:04 GMT
Fortunately for me the person doing psychometric testing seemed to be more familiar with ADHD and neurodevelopmental disorders in adultss. Apparently it's not typically offered because so many people with ADHD don't have different patterns in their IQ scores. But without familial history they felt that any extra information to support the diagnosis could help. Luckily for me, I'm one of those who does. My highest score was the 99.2th percentile (vocabulary tasks), my non verbal tasks averaged the 64th percentile and - particularly tellingly, the tasks assessing working memory (verbal and non-verbal) came out the worst at either 6th or 16th percentile (I can't remember - I definitely had each of those as scores.) My very lowest score came in at the 1st percentile. This doctor seemed much more specialised and openly said that neurodevelopmental disorders tend to cluster. He seemed up to date on research about medication and ADHD itself. He also seemed more understanding of my difficulties getting accurate family reports. He also reckons there's reasonable chance that I could have dyslexia (which I'm not so sure about) and dyspraxia (which friends have been telling me I probably have for years). He didn't have time to test for those since it was a morning slot, though. Indeed, he said it was pretty clear cut ADHD. That it definitely wasn't anxiety causing the symptoms and that he was reasonably certain that my difficulties can't be fully explained by my hearing or ASD. That said, it goes back to the previous psychiatrist to weigh his view into hers and come to the final diagnosis. Eek.
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Post by vagueandrandom on Aug 2, 2016 16:37:09 GMT
That's great news. conceptuallycurious It's really easy to doubt yourself when psychiatrists are not well informed and keep telling you that you have this or that mental illness. . I hope that you can now get a dx and some kind of treatment . .and possibly some academic help.
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Post by conceptuallycurious on Nov 3, 2016 19:09:48 GMT
Good news - the university accepted my diagnosis and are going to give me extra help when I go back, based off the document given to me in July.
Today I went back to the psychiatrist - the one who seems never to read the documents I give her - and where the clinical neuropsychologist thought there weren't any contradictions in my family reports (which were deemed to be of poor quality) based on her letter, she seemed to have come to the conclusion that they were supportive of ADHD?
Anyway, given that my grandmother (who swore blindly that I didn't have ASD) told me she thinks Aspergers runs in my grandfather's line, I decided not to disabuse her of this thought.
Would have been allowed to start medication today, pending physical tests, but the blood pressure machine was broken and she was late to my appointment so we couldn't go to the another department that has one. So I'm going back on Tuesday. I've decided I want to try methylphenidate. I'm allowed to stay on Quetiapine, so don't need to taper off that.
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