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NSHN Forum Support & On Topic Forums. Some additional boards are viewable to members only => Survivor Room => Topic started by: Lorien on September 27, 2016, 07:48:16 PM

Title: Aspergers / High functioning autism assessment
Post by: Lorien on September 27, 2016, 07:48:16 PM
Has anyone got any experience of an adult aspergers / High functioning autism assessment.  I'm trying to decide if this is something I am OK with being referred for. Any idea of what it entails would be really helpful.  I've read through the local pathway information - bit it refers to interviews and questionnaires that are not accessible online.

I know a lot about assessment for children with profound learning disabilities,  but next to nothing about mainstream adult assessment.
Title: Re: Aspergers / High functioning autism assessment
Post by: princess890 on September 27, 2016, 08:02:43 PM
Lorien, I am also in a similar position to you as I am also trying to find a doctor that specialises in autism for myself
Title: Re: Aspergers / High functioning autism assessment
Post by: Lorien on September 27, 2016, 08:44:30 PM
Your gp and other services should be able to find one. The Therapist I've seen for ages has suggested it so I I don't have to find someone because she already knows how to do that. But I'd like to know about it more than I do before I decide.  But it feels like I'm on a bit of a ticking clock because I won't see the Therapist after December. 
Title: Re: Aspergers / High functioning autism assessment
Post by: Gerard on September 28, 2016, 06:44:25 AM
I was assessed by a clinical psychologist over 10 years ago, in my early 20s. Will post more later. Many GPs or frontline staff will probably draw a blank if you mention adults and ASD due to a lack of knowledge.
Title: Re: Aspergers / High functioning autism assessment
Post by: Gerard on September 28, 2016, 01:34:26 PM
Couple of things.

1) I was assessed privately, this can be expensive. My first assessment was with my therapist at that time and the clinical psychologist.
2) My second was with my parents and the clinical psychologist. Are your parents alive? You will need them to provide your childhood history - anything about your language, speech at a young age, what you were like in school, how you related to peers, if you had friends, etc, etc. Ideally, this should be done in person rather than you giving it second hand to the psych, via your parents.
3) This is an area where some snake oil salesmen operate, unfortunately. You need to find a good practitioner/diagnostician. They should be adhering to best practice guidelines. (http://www.bps.org.uk/system/files/Public%20files/Autism%20and%20CJS/Autistic%20Spectrum%20Disorders%20WEB%20(1).pdf)
4) The assessment can be intense and draining. Take some time for yourself afterwards.
5) Tests and assessment tools are generally not available online as they cost a bit for the psych to use/source. iirc, the Autism Spectrum Quotient (https://www.autismresearchcentre.com/project_7_asquotient) was one used in my case, I'll have to revisit my report to check.
6) There is a public perception that the issue is massively over-diagnosed (ADHD has the same negative image), but this claim OTT. It is harder for women and girls to get diagnosed due to the lack of awareness at the clinical level and because their presentations can differ from men and boys.
Title: Re: Aspergers / High functioning autism assessment
Post by: Lorien on September 28, 2016, 10:46:18 PM
Thanks Gerard. 

The Therapist is NHS and so would the person making the assessment.  I don't know what other areas have but here there is a Professor that heads a team specialising in autism in adult general psychiatry.  So hopefully no worries on the snake oil front either. But very useful to know.

I'll have a look at the links, thanks.  It doesn't seem too different than with children with profound disability,  only that I might get some opportunity to answer for myself. 

I'm a little worried that both my family and I would find it nearly impossible not accidentally mess it up, because we work with a lot of people who have autism in addition to other cognitive disabilities. I'm not sure how much difference that would happen.  It's also quite difficult to get my head around either way.  If i don't have an ASD why does the Therapist think I do, and if these people do think I have an ASD - I'm 27 and have had one psychiatrist or another for 10 years, as well as working where I do, so...its difficult to think it would be missed in every sphere of my life. Sorry I'm not sure this isn't just a monologue of what is in my head. It's just difficult to get my head around. 

There are things that do fit, that are difficult to explain in other ways, but I couldn't be certain that it is 'enough' for want of a better word. I also don't know how I feel about either outcome.  I'd much rather she'd never raised it to be honest

Title: Re: Aspergers / High functioning autism assessment
Post by: faithful on September 29, 2016, 02:04:20 PM
I recently had my assessment for autism/aspergers.

It took about 3 hours and consisted of loads of questions. I had to take my Dad and he was asked a lot about my childhood and what I was like as a baby and at school and how I related to other people. I was asked about secondary school and college and up to present. I was also asked about things specific to autism, like my diet and habits with food, eye contact, movements I make repetitively etc.

Before having the assessment I also had to fill in several questionaires and my parents had to fill in one. These were looking at autism traits and asking whether you tend to be blunt, understand humour,etc etc. Based on your scores on the questionaires you either have the face to face assessment or don't. 

It was anxiety provoking for me having the assessment but that's just me. The psychologists were lovely and very understanding though.
Title: Re: Aspergers / High functioning autism assessment
Post by: Lorien on September 29, 2016, 05:42:04 PM
Thanks faithful... Do you mind me asking if the outcome was useful to you?
Title: Re: Aspergers / High functioning autism assessment
Post by: Lorien on September 29, 2016, 05:43:25 PM
Sorry just read in your thread you don't have an outcome yet.
Title: Re: Aspergers / High functioning autism assessment
Post by: Tucan on October 02, 2016, 05:35:45 PM
Pretty much as others have said. My was completed a few years ago now (in childhood I had 2 separate speech therapists at different times and it wasn't picked up until I was in my 20's). It is common for it to be missed. Even professionals don't always fully know what to look for. I can talk to people who work in mental health and they say they would never know unless i had told them. It helped me receiving the diagnosis as it meant I was better able to understand why I struggled with certain things.

I had a preliminary meeting with the 'proffessor' that headed the team. This was done with me alone, with my parents and with all of us.. He decided to then take me to the next stage of the assessment which included large questionnaires for myself and my parents. After a couple of months once the questionnaires were in he took the assessment to the next step. This was around 3 hours I think. My parents were quizzed for an hour. I had to do some talking. There was also a section with specific tasks to complete. One was me reading from a book with no pictures. They assessed my voice, non verbal communication and facial expressions. They looked at my use of imagination. I remember the assessment being adapted from one for kids (as most of the assessments are made for children) so it was a bit young in places. I cannot remember what the assessment was called, it was around 5 years ago.

I hope yours goes ok. Try to hold onto the fact that it is a spectrum so everyone on it is different and struggles with things to different degrees. Good luck.
Title: Re: Aspergers / High functioning autism assessment
Post by: Gerard on October 03, 2016, 07:29:11 PM
Tbh, if your therapist hasn't really justified the reason for exploring it I would question that. There are people diagnosed in their 50s and 60s, so late dx is not unusual as there would have been no resources for those people growing up. Those of us in our 20s or 30s may have slipped through the cracks hence the late dx.

Looking back on my report, I see the psych used Comic Sans font. Ugh. ::) Couple of tests used on me included: ASQ, Diagnostic Analysis of Non-Verbal Ability-2 (DANVA-2), Maladaptive Behaviour Index, Rosenberg Self-esteem Scale, others for depression and anxiety.

Tony Attwood is one of the biggest and well-established names in the field if you want to do some reading. There are some good videos from women on Youtube, also...but if you're pre-diagnosis I would be careful with Googling as you don't want to let those search results play on your mind too much.
Title: Re: Aspergers / High functioning autism assessment
Post by: Tucan on October 04, 2016, 12:15:21 PM

Tony Attwood is one of the biggest and well-established names in the field if you want to do some reading.

I got one of his books. It is good and useful.
Title: Re: Aspergers / High functioning autism assessment
Post by: Lorien on October 05, 2016, 03:59:09 AM
She has explained a bit about why she thinks that. It just feels like a reasonably bug thing to do. I mean people have been quite happy to peg everything in the loose ball park of personality disorder, but are really reluctant to be specific about why they think that. I don't really know which is right or if there is some validity in both.

I'm a bit worried that in asking someone the question outright it might give me a lot to try to get my head around.  Gerard, Toucan - did you find the process helpful? One of the main issues with things as they are is that people I encounter when I'm not really ok get really annoyed because I won't look at them and refuse to accept that the absence of crying and emotional explanation doesn't mean there isn't a problem. I don't know if that would be different or not.  The discussion around ASD in general has been quite helpful in me not being so critical of things that are helpful. If the assessment rules out an ASD I'm not 100%  I won't go back to being completely unable to let myself do things that are helpful.  It just seems like quite a big question. I will have a look into the Tony Attwood stuff.
Title: Re: Aspergers / High functioning autism assessment
Post by: Tucan on October 05, 2016, 09:11:58 AM
Yes I did find it helpful. It wasn't an easy process but it was a spring board toy recovery. It meant I could access stuff specifically for the aspergers, it helped professionals to adapt to working with me. I also got take more seriously, then again I think the stigma from professionals to people with personality disorders is awful. It also meant that I stopped beating myself up over my autistic traits. I accepted myself more and stop giving me such a hard time. For example I don't look at faces because I am not well, rather than I don't look at faces because I am rude and ignorant.
Title: Re: Aspergers / High functioning autism assessment
Post by: Lorien on October 05, 2016, 12:50:31 PM
Thats really helpful Toucan, thanks.  I'm glad it was helpful.  I think maybe I just need to bite the bullet and say that it's ok to make the referral.  I might write it down. Then I will still have a while to look into it and think things through. 
Title: Re: Aspergers / High functioning autism assessment
Post by: Lorien on October 26, 2016, 12:53:50 PM
I think being up all night has made things a bit :1033:

I'm not sure what I will think about it when I've had some sleep, but i think that maybe the long drawn out conversations I've had about this whole thing might have broken something in a good way. For the moment I think it has broken my ability to sleep, but hopefully that is temporary. Mainly I think it has changed how I see doing things that are helpful rather than s/h. I guess I kind of mean distractions, but I kind of don't. Most of the things are sensory things that I wouldn't allow myself to do before all of these conversations, even if I thought that they might help. So now I can do some of those things and it is helping (I've not done anything for the longest I've ever managed) somehow the things that go backwards and forwards in my head in arguments are less b*tchy and unhelpful...which again makes things easier.

But now I am second guessing everything because the last time I saw the Therapist, in fact the last few times, she has insisted that she has not been able to do anything helpful. I think I kind of blew my head up tonight with thinking about it. Now I can't work out if she is just being really self deprecating and incapable of seeing she actually achieved something I insisted was impossible, or if she was trying to make me do this, or if I am wrong and everything isn't different because I can do that, or I only think I can do that now because I am riding the lack of sleep and really I didn't get anywhere at all. There are 7 appointments left with her, so i could really do with her not losing it now, and not making me wonder if I've lost it either.

I also watched a series of Tony Attwood Youtube videos - which makes me less doubtful that it is an accurate description.
Title: Re: Aspergers / High functioning autism assessment
Post by: Hyzenthlay on December 02, 2016, 01:24:35 PM
I had an assessment a couple of years ago. I wasn't sure how to answer many of the questions, but the doctor gave me the diagnosis of Aspergers based mostly, as he said, on watching me. I have a lot of nervous habits like fiddling with my hair, earrings and necklace and I also stim and tap my feet. I refused offers of therapy etc cuz I am thirty seven years old and in that time, have learned coping methods. I can hold down a job and am in a long term relationship. Some help would have been nice when I was a teenager, but now I don't need any.
Title: Re: Aspergers / High functioning autism assessment
Post by: Lorien on January 11, 2017, 03:35:41 PM
So, they wrote the referral and I've got a copy of it. They sent it at the end of November,  but I've not heard anything, not even a thing to say they have it but there is a waiting list or something.  I don't see the Therapist now, I'm kind of wondering how long to wait for them to reply and what to do if they don't. I get that Christmas will have messed things about a lot, but it just seems really odd that I have no idea how long it will take for them to reply
Title: Re: Aspergers / High functioning autism assessment
Post by: Rob on January 11, 2017, 06:47:04 PM
Is it an option to ring and ask what the normal waiting time is? Seems an inoffensive enough question to ask.
Title: Re: Aspergers / High functioning autism assessment
Post by: Lorien on January 16, 2017, 04:26:53 PM
I wouldn't be able to do that, but I could ask my girlfriend.  She has actually already offered - but will it be annoying to them?
Title: Re: Aspergers / High functioning autism assessment
Post by: Gerard on February 08, 2017, 07:58:05 PM
Only if they're defensive, I'd say.
Title: Re: Aspergers / High functioning autism assessment
Post by: Lorien on March 19, 2017, 05:53:13 PM
so I went.

it was interesting, he was very focused on talking to my partner and has insisted that my Mum comes next time. It feels very weird to be talked about like that. I have a tonne of leaflets and information as well as a tonne of tests and questionnaires. They estimated a wait time of 18months for a full assessment. So now I'm pretty much back to where I was before that.
Title: Re: Aspergers / High functioning autism assessment
Post by: Gerard on March 21, 2017, 08:27:46 PM
Sorry to hear about the long wait, that's very frustrating.
Title: Re: Aspergers / High functioning autism assessment
Post by: Lorien on May 16, 2017, 12:22:40 AM
yep, but now they have sent a letter saying that they do think I am on the spectrum, but they want to do the assessment to pin down where...so now I am kind of maybe a kind of Autistic-ish, they think...and I am less sure I know what to do with it and more sure I'm a bit annoyed it wasn't questioned before.

 :penguin8:
Title: Re: Aspergers / High functioning autism assessment
Post by: Tucan on June 13, 2017, 11:32:46 PM
Bless you. Unfortunately these things can take time. I was lucky that I didn't have to wait that long. Think my wait was around 6 months.
Title: Re: Aspergers / High functioning autism assessment
Post by: Gerard on March 12, 2020, 12:49:35 PM
I'm a few chapters into this book. Only published last year, so it's up-to-date. Finding it good.

https://www.amazon.co.uk/Girls-Autism-Educational-Personal-Perspectives/dp/0815377266/ref=sr_1_1?keywords=autism+and+girls&qid=1584017326&sr=8-1
Title: Re: Aspergers / High functioning autism assessment
Post by: Lorien on March 16, 2020, 03:53:28 AM
I'm a few chapters into this book. Only published last year, so it's up-to-date. Finding it good.

https://www.amazon.co.uk/Girls-Autism-Educational-Personal-Perspectives/dp/0815377266/ref=sr_1_1?keywords=autism+and+girls&qid=1584017326&sr=8-1

Thanks I'll have a look.
Title: Re: Aspergers / High functioning autism assessment
Post by: icicle on March 26, 2020, 02:09:45 PM
I've read this now. As the title suggests, it is mainly about girls rather than women, but it was worth the read.
Title: Re: Aspergers / High functioning autism assessment
Post by: Gerard on March 29, 2020, 11:11:49 AM
Hate having the diagnosis. It's ruined my life.
Title: Re: Aspergers / High functioning autism assessment
Post by: icicle on March 29, 2020, 12:43:07 PM
How? Did it stop you from getting clearance for a profession?
Title: Re: Aspergers / High functioning autism assessment
Post by: Gerard on March 29, 2020, 01:05:45 PM
No, but I'll never have the career I aspired to, or others that were plan B, C. Never mind the more personal stuff - friendships, relationships, isolation, quality of life. The thought patterns are relentless, as my psychologist knows.
Title: Re: Aspergers / High functioning autism assessment
Post by: Vermilion on March 29, 2020, 01:41:06 PM
I have to admit that the dx has helped me a lot. I've finally gotten the support that I've needed since I was little. I used to frequently get misunderstood by MH workers due to lack of eye contact, taking things too literally, etc but now that I've actually got a dx things are much better in that regard.
I don't think there are many jobs that a dx of ASD would stop you, I know that we can't join the army but I can't think of anything else.
As for having the 'disorder', that does indeed suck. I seem to be incapable of holding down a job, unable to drive, can't maintain relationships and so on. I'm still working on these issues but I am hoping that one day I will lead a relatively 'normal' life. Have you ever seen someone from Occy health regarding employment?
Title: Re: Aspergers / High functioning autism assessment
Post by: icicle on March 29, 2020, 01:42:04 PM
Isn't that down to Autism as opposed to the diagnosis?
Title: Re: Aspergers / High functioning autism assessment
Post by: Vermilion on March 29, 2020, 01:51:37 PM
I'm not actually sure which one Gerard was talking about. I tried to address both sides. I suppose for me being autistic is crap but having a dx has helped a lot.
I could have completely misunderstood what he said though!  ::)
Title: Re: Aspergers / High functioning autism assessment
Post by: Gerard on March 29, 2020, 02:35:03 PM
Yes, it's the AS that's intrusive. I've known since a young age that I was different. The diagnosis was confirmation, though it took some time to accept and it found me rather than being something I actively sought out. I've a cousin who was diagnosed much younger, resources were more available when he was growing up.

I'm fortunate enough to have a job (p/t). Trying to find another as my boss is not good. With another recession coming it's going to be hard for everyone.

Forgot to mention camouflaging/masking. It's exhausting.

https://link.springer.com/article/10.1186/s13229-019-0308-y

https://www.sciencedirect.com/science/article/pii/S221503661930224X

http://docs.autismresearchcentre.com/papers/2018_Hull_Development_and_validation_of_camouflaging_autistic_traits_questionnaire.pdf

https://medicalxpress.com/news/2020-02-tool-hidden-autism-adults.html

https://journals.sagepub.com/doi/full/10.1177/1362361319878559

Title: Re: Aspergers / High functioning autism assessment
Post by: Vermilion on March 31, 2020, 11:04:58 AM
Oh, I know what you mean with the masking, a social interaction leaves me drained for days. Well done for managing to work as well, I'm hoping to be able to do that one day too.

I wasn't dx'd until 30 (32 now). Apparently girls are especially good as masking, so much so that ASD was considered to be almost exclusively a boy thing. Many people on the 'high functioning' end of the spectrum seem to only get a dx after a referral to MH services rather than those who are severe who tend to get dx'd at school. I do wish that I was dx'd earlier, it's rally difficult to break long term behaviour and thought patterns and learning social skills earlier would have prevented a lot of crap from happening. I share my experiences with researches to help other kids, hopefully they'll at least get the help they need earlier on.

In my local area there organisations that work with people who have MH/ASD to help them find work. It might be helpful to explore suitable jobs. I did a 'sensory profile' with an OT a while back, it helped to get an idea of suitable work environments i.e quieter, structured, less social etc. While I'm too 'unstable' at the moment I know that I'll be able to get back in to work in the future. I realise it's difficult with the lock down but once it's all over you could probably do something.
Title: Re: Aspergers / High functioning autism assessment
Post by: Lorien on March 31, 2020, 03:02:10 PM
I've always done better when I've been working - I think it is that there is a level of external routine and because of the jobs I've had, a level of not wanting to impact on the care of other people. It is very difficult to get the right balance, I'm still not there with that, but at times when I've been off, the longer it was the more I spiralled.

But I have always worked with autistic people even before I had any idea that I am autistic. That tends to make the environment at work much easier. Ive also found that I am more able to do things with/for other people than I am for myself.
Title: Re: Aspergers / High functioning autism assessment
Post by: Vermilion on March 31, 2020, 11:26:53 PM
A lot of it depends on the work environment I think, I've been very unfortunate in that regard. Noisy, chaotic hours etc. I hope to do some more work with Occy health in the future to figure out the best thing to do. I think that there are huge benefits to working with the routine and structure etc but there's also the knowledge that I'd be doing something useful and contributing as best I can. However, I can never seem to get the right balance of pushing myself slightly and trying to do too much, I really hope that professionals will have some insight. I do worry about the length of time it could take but it's pointless to force myself to go back to working too soon and undo the hard work I've done with professionals. It's hard but I've learned that sometimes it's better to listen to the professionals who know what they're talking about.
I suppose that when others are autistic there is a lot more understanding, there will be others there that understand things like sensory issues and 'stimming' type behaviour. I noticed that when I attended a post dx group although it was still a struggle.

Quote
. Ive also found that I am more able to do things with/for other people than I am for myself.
I was actually trying to get over this exact problem with my old CC. For me I feel like my 'issues' are non existent or don't matter, likely because I was perceived as being naughty/disobedient etc as a child and when I got older I was seen as stubborn/making excuses etc. This was because of a late dx and no-one was aware that I was genuinely struggling, not even I was aware. I guess it's hard to break out of these ideas that have been drummed into us for our entire life so far.

That turned into quite a ramble!  :blushing1:
Title: Re: Aspergers / High functioning autism assessment
Post by: Lorien on March 31, 2020, 11:49:37 PM
That wasn't what I meant. I meant I can literally do more at work than I can at home. I used find it impossible to go into shops, but slowly through work I built up strategies to help me to be able to do it. I could talk to people I knew but not people I didn't so I talked to the person I was working with instead - like "we need to wait for the receipt" rather than telling the cashier we'd like one etc. It took about 5 years before I got to the point I could just walk into a 'local/metro' sized shop. These days I can do a supermarket when it's not busy - with tinted lenses, a full list, music on, self service and payment by card. But I can do it. I don't think I would have learnt the same things in other ways. A CBT guy once advocated for pretty much full on exposure - but also pointless things. "Go stand in the supermarket for 10 mins, then you can leave" his theory was I'd see it wasn't scary - the effect was to prove it was too much.
Title: Re: Aspergers / High functioning autism assessment
Post by: Vermilion on April 01, 2020, 12:19:17 AM
Ah, I see what you mean now, the very time time I should take something literally..! I think I can understand that itwould be easier than talking to people directly but I worry that would come off as rude to some people? My brain tends to over think things like this though, often to the point where I get it completely wrong! Thinking about it, my lack of eye contact and mumbling probably comes off as a bit rude too. The important thing is that it helped you. It seems that you were lucky enough to find a workplace where you were able to do that, work really does help people in so many ways. I often learn by imitation, watching how others react to situations.
Anywho, I guess that work is a huge boost for self confidence as well as general life skills and being out of work could have a negative effect on them. Again, it's about that balance that you seem to have gotten the hang of better than I have.

On a side note- when I'm at the supermarket I find the 'scan as you go' really helpful; I can check prices of things without asking staff, I can already see what the bill will be before I go to pay (my maths skills are appalling) and I can put everything into the bags as I'm going atound which means that I don't get in a flap at the checkouts. Then I just scan the barcode, pay via card & go home. Zero human interaction providing other customers leave me alone.

I seem to babbling again, apologies if I have.