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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To ask here about adult ASD

19 replies

BumpingFuglies · 07/03/2013 09:58

Can't see an appropriate section in the SN topic and don't want thread to disappear if I get some helpful advice.

DSC are being assessed at the moment and DP has just started the ball rolling for a referral to a specialist. I don't know very much about it yet but the DC are on the hyperactive side, while DP's symptoms are more the obsessive type.

Can anyone tell me what to expect with all of this? I have found some great stuff on MN with regard to the children, but not about diagnosis of ASD in adults.

Be grateful for any advice, experience or links, thank you.

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BumpingFuglies · 07/03/2013 10:00

Oh, forgot, GP has put DP on 50mg Sertraline as well. Is this usual?

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Catchingmockingbirds · 07/03/2013 10:04

When my son had his dx I joined a few Facebook groups and online forums (wrong planet etc) for adults on the spectrum to find out about the difficulties they encountered and how they found coping with life on the spectrum.

What was the medication prescribed for?

BumpingFuglies · 07/03/2013 10:22

Thanks Catching. I'm not sure what the Sertraline is for but a quick Google says anxiety, depression or obsessive disorders. DP is not anxious or depressed so I assume the latter. Not sure why this would happen before he is diagnosed.

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Cailleach · 07/03/2013 10:34

Bumping this is the MN thread for adults on the ASD spectrum:

www.mumsnet.com/Talk/feeling_depressed/a1429582-Support-thread-adults-on-the-Autistic-Spectrum

My experiences of being diagnosed are on there. I am happy to answer any questions you have regarding the diagnostic process or indeed about what it's like to have an ASD.

Best wishes,

C

BumpingFuglies · 07/03/2013 10:42

Thanks very much Cailleach will have a look now

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MurkyMinotaur · 07/03/2013 11:39

Long post alert!...

Having been diagnosed as an adult, my best advice is 'persevere'. You may like to read up about AS on the National Autistic Society website (link below) which has advice about adult diagnosis.

www.autism.org.uk/

Unfortunately, my experience of seeking assessment through the NHS was a long and frustrating one and sadly, this seems to be common for adults. The NHS seemed to treat symptoms but not investigate the cause. It could be that you've got a great, clued-up GP who has prescribed Sertraline to assist your DP and will also provide an assessment referral. Or, it could be symptom-shooting. You and DP can work that out though and choose what's best.

It may be wise for DP to ask who exactly he will be referred to. What is their expertise? What is their aim? I was, at first, referred to the general mental health team. Of course, AS is not a mental health condition, it's a developmental disorder, however if this is merely the inbetween step to referral for AS assessment with appropriately qualified professionals, then that's good.

In my experience, I was next referred to consultant psychiatrist who said, when I asked him, that he knew little about AS. I was fobbed off with patronising and ignorant answers such as 'Just try harder', 'You're fine - you've got friends!' and 'People who have AS don't self-refer, it's always other people who bring them in'.

So, swat up and stand your ground. Ask questions (or have DP ask them) and keep going!

Unfortunately, I never managed to get an assessment on the NHS. I paid privately for an assessment with the Hoffmann Foundation, London (who have a self-referral option). It was a massive expense, but it's the difference between explaining why I'm different because of autism, or people assuming I'm mentally ill. It's not wrong and bad to be mentally ill, but if you're not ill and it's your personality that people think is an illness, it's right to let them know otherwise, hey?

My assessment was 3 or 4 hours long and referred to the current 'DSM' criteria. The DSM is the 'Diagnostic and Statistical Manual' for mental disorders. Now, although AS and autism are not mental health disorders, it comes under that heading in this case. Your DP could ask his assessors which set of criteria they will refer to in his assessment and it should be a recognised one such as this, or perhaps the 'Gillberg' criteria.

Next, they should be able to tell your DP what assessment method they will use to assess AS. For example, my assessment followed the 'ADOS' (Autism Diagnostic Observation Schedule).

It's also ok to ask what experience and qualifications the professionals have in the field of AS.

The Hoffmann Foundation gave me this information as a matter of course, before I had chance to ask! So, I imagine it's reasonable information to want to know.

The assessment itself was a mixture of questions and talking, with activities. There were two psychologists who made notes and later produced a report detailing how my traits matched or didn't match the DSM criteria for AS. This is the sort of outcome I would expect. During my previous attempts to have an assessment on the NHS, the consultant psychiatrist I mentioned earlier, who admitted he knew little about AS, wrote in my report that I was unlikely to have AS but if I did, I would be on the extreme mild end of the spectrum. He made no referrence to DSM criteria or any other authority on ASDs. When I was assessed in London, I was on the autism end of AS, so not mild at all! So, do be objectively critical and make sure you receive valid and respectful responses from the professionals you encounter.

Before my assessment, I chose to gather information that I thought could be useful for the assessors to gain a picture of me throughout childhood and adolescence. For me, this included school, college and work experience reports for example.

I hope your experience is a good, straight-forward one! I hope my warnings aren't daunting but rather they encourage you to persevere.

BumpingFuglies · 07/03/2013 11:53

Thanks so much for that Murky I am going to print it off!

DP has to go back to the GP next week as he admitted he didn't know much about ASD. DP is not reacting well to the Sertraline, he has had to go back to bed this morning. He says he feels like a zombie and his legs are like jelly. This is only day 2 though. I'm wondering whether to persevere with it or wait until next appointment? May post this question on MH actually.

DP said the GP was helpful but not very knowledgable.

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ProudAS · 07/03/2013 22:19

Getting diagnosed as an adult is an uphill struggle. I even had gp say that I wouldn't gain anything from it (being diagnosed has saved my marriage and probably my job which I'd hardly call not gaining anything).

I got diagnosed privately at age 30. Just wish it could have been 20+ years sooner.

MurkyMinotaur · 08/03/2013 00:39

I was thinking about how medication may have been prescribed for obsessive traits. I like to think in terms of 'healthy or unhealthy' rather than 'normal or abnormal'. AS obsessive behaviour or obsessive interests can be abnormal (in the literal sense of being statistically unusual) but healthy (e.g. a means of relaxation and enjoyment, kept in moderation, without a detrimental affect to the family etc). Or an obsession can be normal but unhealthy (e.g. common in society but too much time and money spent on it) or any other combination. A GP who is unfamiliar with the possibility of obsessive traits being normal and healthy for someone with AS might inadvertently assume the obsessive traits are unhealthy rather than quirks and offer treatment as a solution. Possibly. It's just a thought to consider.

BumpingFuglies · 08/03/2013 08:07

Murky what would be an example of that? DP spends a lot of time on computer games, which annoys me. Sometimes he ignores the kids when he is on it, but is generally a good father. Is that the sort of thing you mean?

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MurkyMinotaur · 08/03/2013 22:25

I guess I just wanted to draw the distinction between 'normal' and 'healthy', because I hope that professionals treat your DP with respect for the fact that while AS obsessions can be unusual, they aren't necessarily a problem or a symptom that needs treating.

I thought that if I made sure you're aware that GPs etc could make the mistake of assuming 'abnormal = unhealthy' then you can judge for yourselves and be in control of what you and your DP want to treat with Sertraline.

An example...

My special interest (obsession) is toys. Some professionals have previously assumed that because this is an unusual interest for an adult, that it is unhealthy and shows weakness or regression. In reality, it is a fascinating topic. You can see sociology through toy marketing (e.g. gender roles), study design, compare past and present, analyse child development stages...etc.

BumpingFuglies · 08/03/2013 23:07

Ok, thanks for that Murky. I think I understand now.

DP is persevering with the Sertraline, even though neither of us are convinced as to why it was prescribed. To be honest I'm kicking myself for not going in with him to see the GP. He asked me to but I said I didn't want the GP to think I was trying to 'diagnose' DP myself. I shall go with him next week though.

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MurkyMinotaur · 09/03/2013 16:49

I'm impressed that the GP admited to not knowing a lot about AS and took the time to look into it. That's really cool.

I hope the appointment next week goes very well.

Dawndonna · 09/03/2013 17:24

Bumping People with ASD are wired up differently, that means they may also respond differently to medication, don't persevere with the sertraline if it's making him feel physically rough, a few of the depression symptoms are likely to be exacerbated, but there shouldn't be physical symptoms. If he doesn't feel that he is suffering from depression (very common in late diagnosis ASD) then stop taking it.

PipinJo · 09/03/2013 21:12

This reply has been deleted

Message withdrawn at poster's request.

PipinJo · 09/03/2013 23:56

This reply has been deleted

Message withdrawn at poster's request.

BumpingFuglies · 10/03/2013 21:38

Thanks all, been at work.

To be honest, I'm not sure WHAT the GP prescribed the Sertraline for. I shall definitely be with DP at the next appointment.

Thanks PipinJo shall have a look now

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Toni27 · 10/03/2013 21:38

You might find a video on you tube called temple grandin my experience with autism interesting, dr temple has autism herself and explains what it is like to have autism. Our son is 3 and autistic and we found her talk very inspirational and gave us a great insight into how our sons condition makes him feel.

BumpingFuglies · 10/03/2013 21:39

Ah, just realised on that thread already! Blush

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