....to ask how you go about getting a diagnosis as an adult with Asperger?

[Ubertasha2]

That’s it, really.

Don’t want to go into it too much as I know this is who I am and I am more than happy about it tbh, but I actually do want a professional confirming this. I would be happy to have this label so I can bring it up if I want, or if something is challenging for me I can remember that I have this diagnosis.

I have obviously googled how to get a diagnosis but am none the wiser, really. Do I go to my GP first (if I can get an appointment this year)? Or should I pay to meet with a psychiatrist? Any idea on how they test me?
And if I tick some boxes (ie like to be alone, overwhelmed by other people, sensory issues etc), but not others (not lacking empathy etc), what happens then?

I am 99.99999% sure I am on the spectrum. I think you know when you are. I’ve known for decades (particularly when at school, uni, etc), and would be relieved with a diagnosis/professional opinion.

Oh, and you did get the diagnosis, did it change anything for you, apart from explaining a lot and giving you relief?

TIa.

Not sure if it’s appropriate in this thread but I have some questions for those who have indicated they have not been able to hold down a job due to ASD. I’m really worried about how the questions will come across so up front I don’t mean any disrespect, I’m genuinely curious as to the issues and am asking hoping it will be of value to my child and maybe others reading not diagnosed who may be wondering about themselves in this regard.

My child’s dev paed has always maintained they should be okay in the workforce with a few caveats . Basically the need to ‘play to strengths’ in regards to getting a very technical job that matches interest. The job should limit exposure to people as much as possible, where most tasks/projects would be undertaken individually and in an area where most likely others working with them would be quite similar. So basically something like theoretical astrophysicist (as an extreme example) as opposed to a graphic designer working in an advertising agency or anything in sales.

Pretty obviously, as a teen, my child was never going to be able to work in the usual teenage jobs while at school. They would not have lasted a day working in a supermarket, bakery, newsagent etc. Meltdown from hell would probably be an understatement. So, we encouraged limited work in a niche interest. Obviously it didn’t result in much money (not as much as the average part-time job a teen would have) but it was more about learning to have someone as a manager, workplace expectations and to have to interact with a few peers who had the same intense interest in a safe environment. That went pretty well and they are still doing this while going through uni.

They are now doing a uni course that should result in employment in a highly technical, niche area they are interested in and they feel they should be happy in. It’s also an area where the average person would be considered ‘odd’ by many. The people doing their course seem pretty similar in a lot of respects. They are starting to go to some student/industry events and do a bit of holiday work (no money, just experience). Seems to be okay so far but I’m mindful that some holiday work as an unpaid uni student is not the same as full time employment.

Basically, we have tried our hardest to set our child up for success but after reading some of people’s experiences I can’t help but feel we are missing something given we are dealing with this as ‘outsiders’. Having said that I’m pretty positive DH would ramp it in if assessed and all the things we have put in place are pretty much things DH has and he has coped in employment. I realise a lot of that is coming across as very controlling but our child actually wants us to do this - used to be ‘for them’ but now as a young adult it is ‘with them’.

So basically if your ASD has caused issues with employment and made it difficult to hold a job, what have been the main issues? I’m really worried there is stuff we have missed when trying to set our child up in this regard. Also, obviously you can only control things so much. Others suspecting ASD may also find this information useful as a yardstick.

For those of you that have gone privately, how did you pick where you went? And was the diagnosis accepted, for example by Occ Health at work?

My GP has basically said no to referring me and I can't afford to wait the v long NHS waiting time anyway. I am more than happy to pay privately but struggling to work out where to go.

Out of interest, is ASD something you have to declare as an existing condition on travel insurance?

After reading on here, and following various links, I was convinced ASD "explained" me - I went to the gp armed with print outs of various tests and articles about how women with ASD present etc

But-but, But- although I fit with Tania whoever's criteria to a T, and scored heftily on all the tests relating to ASD etc, my diagnosis was not ASD. Initially, I was disappointed, as I had pinned a lot on this as being the solution to "what's wrong with me",and it wasn't. What is "wrong" with me is what has always been wrong - major recurring depressive disorder, GAD, innate eccentricity and extreme introversion. One of the psychs referred me for MBTI testing, which was actually very illuminating, and explained a lot about my personality, behaviour and interactions (or lack of) with others, down to my masking behaviours.

That said, in retrospect, I don't regret seeking a diagnosis - at worst, it's at least ruled out ASD as being the source of my issues: but, like PP, I would warn against being as over-invested as I was in getting that diagnosis, and remember the possibility that the symptoms causing you to seek diagnosis may be caused by something else entirely - and consider how this might impact you and your sense of self. People often assume - and have often assumed - that I have HFA, including HCP, and once I had finished reading up, so did I. It seems odd to feel disappointment not to receive a diagnosis, but I really was initially quite devastated, as I was desperate for the "magic bullet" explanatory tool of why I was so different.

HoppingPavlova
The type of autism you describe your dc as having is a fairly standard stereotypical (apologies for the terminology but it's pretty much universal) geeky nerd presentation and as such the science, tech, IT field is already highly populated with people very much like him/her so hopefully the workplaces will already have a lot of interventions in place as standard.

Ask your dc what appeals and what appalls about the work experience they are having and see if that gives you anything to work with.

Artists, musicians and other creative people can and do also have autism, so you need to be looking for specific things s/he needs, rather than a general comment like autistic people don't like flickering bright lights, people everywhere, loud noises, smell and sound of general office behaviour, slurping drinks, eating noisily, spontaneity etc.because each autistic individual is just that, an individual with their own preferences and tolerances and limits.

AnnaMagnani

If you go for a private diagnosis, make sure the team you see are "accredited" by the NHS i.e. that any organisation you may want to submit your dx to will accept their dx in the same way they would accept an NHS dx.

The Lorna Wing Centre is one such diagnostic team, there are others but I don't know where to find that particular info about them, sorry.
www.autism.org.uk/services/diagnosis/contact%20us.aspx

HoppingPavlova
It's sounds to me like you are doing all the right things.

My problem with employment has been being undiagnosed and trying to force myself into a normal box. I've just ended up exhausted by every role and not knowing why so I've quit thinking it was that particular job, while at the same time mystified that other people seemed fine with it... It's taken a long time to realise it was me. Not understanding myself has led to trying really unsuitable jobs! I tried to be a teacher FGS. Hahaha. That didn't work. Although I got on great with the kids and could put on a fantastic show of a lesson... Lack of executive function is an issue. Employers and bosses and colleagues constantly moving goal posts are an issue. Change is an issue. Lots of things are an issue. But I would have a lot to bring to a workplace if I can have adjustments made... most employers didn't want me to leave, apart from the ones that asked me to due to me melting down at the wrong time.... but once I'd made up my mind...

FWIW I think your kid will be fine. Because you know and are working on it. My problems cone mostly from not knowing. I think.

FaithInfinity Glad you liked the images, I think Rebecca Burgess has singlehandedly explained the autistic spectrum in a way that's so easy to understand and to me it was blindingly obvious once I saw it.

Link to the whole comic the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

You're right, traits are just traits, in a nutshell, autism is diagnosed by finding particular traits with the unpleasant name of The Triad of Impairments which have impacted daily life to a very large extent since early childhood.

From the NAS a medical definition
www.autism.org.uk/about/what-is/asd.aspx
"How autism is diagnosed
The characteristics of autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests since early childhood, to the extent that these limit and impair everyday functioning".

Hopping Pavlova,

I am sorry if the example of my husband caused any anxiety with respect to individuals with autism gaining employment. Every individual is different and unique and my husband's autism is not his only problem.

If your doctor is dismissive, but you still feel you need to know, its worth trying a different doctor.
I only got my diagnosis very recently, but they have said that they are going to offer me support for my anxiety tailored towards people with aspergers - I was diagnosed aspergers . I wonder if its just children they dont use this term for anymore or whether its not across the board?
Also im hoping a formal diagnosis will help me access support with my studies.

Its allowed me to forgive myself somewhat for some things that ive always struggled with

HoppingPavlova Your comments on the differences between Aspergers and Autism/HFA as perceived by your DS and his friends - and also, more worryingly, by the professionals - are really quite bewildering because the only difference between them is the presence or otherwise of speech delay in infancy. And that's all. I can see why the DCM rejig had the the two covered under the same umbrella as just Autistic Spectrum Disorder, because that's only a significant difference in infancy; when the children concerned have grown older and acquired reasonable speech/language skills it is no longer an issue.

My DS and and my nephew both have autism; my nephew diagnosed when he was four and my DS when he was three. One has HFA as his dx, one has Aspergers. I really really doubt anyone could say with any confidence which one got which dx. Your DS and his mates prefer the Asperger dx because they perceive it as sounding better, more appropriate for them than "autism". I imagine that's because autism/ASD was the diagnosis for children who presented with Kanner's classic autism, which was used more with lower functioning children. Aspergers could only be applied to people with high functioning autism (as Tony Attwood specified, not me. I have said this on here before and been told a child with very low IQ has HFA so I must be wrong... if I am, then Tony Attwood is, take it up with him!)

FWIW, I actually score higher than my DS does on the online tests, even though they tend to be geared towards males, (would really like to see some specifically geared towards females), so I imagine that should I pursue diagnosis I would most likely qualify. I don't work any more though so I am not sure what advantage it would bring.

(My mother also seems very Aspergers to me, although she is in her seventies and would probably be averse to even discussing it. Although I suspect my brothers have discussed it, what with their odd sisters having produced some odd offspring... )

Yes i test 'worse' than autistic males in the online tests too.

Im still struggling to articulate what i struggle with at work!

TheNoodlesIncident, I think we are talking at cross-purposes.
Will break the reply over a few posts to avoid a huge one.

You are talking about diagnostic criteria on paper. I was talking about how professionals claim they have have experienced the different clinical presentations over many years. No-one is disagreeing about what criteria led to what diagnosis but they are saying that their experience is that patients that were diagnosed with autism present completely differently to patients diagnosed with Asperger's, essentially that in the real world it seems so much more than a tick box on paper as to whether there was speech delay or not. So, yes working on the basis that on paper it was one tick box that provided the differentiation it would seem to make sense to lump it all in together. However, they are saying it should have gone the other way where more thought was put in to remove the speech delay distinction as the differentiator and make each a stand alone based on so much more that they observe.

To go to absolute extremes, a psychiatrist I was discussing this with said, on the basis of similarities they would be more inclined to lump Aspergers in with Bipolar than Autism. They claim their patients with Aspergers are often more similar in many respects to their patients with Bipolar and they see more overlap there than they do with Aspergers and Autism. That's their experience of clinical presentation in real life rather than tick box criteria on paper. Keep in mind this person see's adults only, no paeds so their experience is limited to adults.

My DS and and my nephew both have autism; my nephew diagnosed when he was four and my DS when he was three. One has HFA as his dx, one has Aspergers. I really really doubt anyone could say with any confidence which one got which dx.

See, this is funny and where we all have different anecdotes.
My DS and their friends had a mate who was diagnosed (under old system) as HFA. However, for whatever reason his parents refuted this and so even though this was his diagnosis on paper told the child and everyone else that they had Asperger's. They told our 'parent group' during a chat one day on the basis that it was "so ridiculous and they clearly have Aspergers". It was pretty much a haaa, that explains a lot moment for the rest of us though as everyone had always thought their child was 'different'. No better, no worse, just different.

Also, it was something our kids never knew as it was not relevant to tell them, the child identified as Aspergers, so be it, who cares. However, the kids always thought he was 'different'. My child said on a few occasions that he was not like them, not in a bad way just musing on the fact that the rest of them 'fitted' together and this child did not. The school they attended also noted it to the kids parents, that they felt the parents self-proclaimed diagnosis was probably not right and the one on paper was as their child seemed clearly different to the group of Aspergers they had, and they had boys and girls albeit a much larger group of boys. This was a niche private school that specialised in kids who were not typical, not only ASD but also things such as dyslexia, dyspaxia, physical disabilities, intellectual disabilities. So they had the gamut, kids in Year 10 who were on Year 2 readers with the focus on learning life skills and kids in Year 10 who were accelerated and doing uni level work for some subjects. Kids who had intense learning support due to learning difficulties, kids who were gifted but needed a supportive environment. Based on their experience over the years they felt they were able to(informally) identify Aspergers and HFA in certain cases at least.

Your DS and his mates prefer the Asperger dx because they perceive it as sounding better, more appropriate for them than "autism". I imagine that's because autism/ASD was the diagnosis for children who presented with Kanner's classic autism, which was used more with lower functioning children. Aspergers could only be applied to people with high functioning autism (as Tony Attwood specified, not me. I have said this on here before and been told a child with very low IQ has HFA so I must be wrong... if I am, then Tony Attwood is, take it up with him!)

As above, they identify with Aspergers as they feel it is is different to people that they know who were labelled as Autism or HFA in the old system. You are right, they don't identify with the other types. I can't make them. The comment that they prefer it as they perceive it as sounding better is quite off though on several levels.

As I said previously, we know 3 families that have a child diagnosed with Autism under previous criteria. My child does not identify with these children at all. All are non-verbal, not toilet trained and some now in care as 'adults'. One of these families also has an adult brother diagnosed with Autism (so an Uncle to the child with Autism), pretty much a carbon copy of Dustin Hoffman's character in Rain Man. My child does not identify with that either. None of their group does. However that's all it is, they don't identify with these presentations, they don't think they are better or worse, just different. In their minds it's like they have diabetes but are being compared to people who are deaf. Neither is better/worse, just completely different things.

I was specifically told that I wouldn't qualify for an Aspergers diagnosis, but I do qualify under the new DSM-V ASD criteria, so I'm always a little hurt by the people who are against the new, more inclusive diagnosis.

I'm also really baffled by the minority of people who insist on telling me I have Aspergers, purely because I'm intelligent. In some ways it's almost borderline offensive, there's a wiff of "oh you're not like those autistic people...".

If you meet me on a good day, you'd probably label me as Aspergers/high functioning. If you meet me on a very bad day, you'd label me as severely autistic and low functioning.

I'm relieved that the merger has happened, and I can finally explain to people that the stereotypes make no sense and there is in fact no bloody difference.

I think it's far more likely that autism as a diagnosis should be split apart on completely different lines.

Very helpful thread thank you.

I'm also really baffled by the minority of people who insist on telling me I have Aspergers, purely because I'm intelligent. In some ways it's almost borderline offensive, there's a wiff of "oh you're not like those autistic people...".

Yes, that's just absolute rubbish. The child I was referring to above who was actually diagnosed with HFA but who was always told they had Aspergers is far and away more intelligent than the rest of the group diagnosed as Aspergers. They are all very intelligent but definitely not in the same league, this kid is beyond brilliant. However, has never been able to work in any capacity. Ours have never had 'traditional' teenage jobs but things aligned with interests that are more technical in nature as opposed to customer service facing/focused but this child couldn't do this. Similarly, ours are all 'surviving' uni with eligible supports. This child didn't make it past first year, nothing to do with not having the intelligence as they have this in spades but just not able to cope in total with most facets.

So, definitely Autism does not equal not intelligent!!

My son, diagnosed with Aspergers aged 12, came out as average or slightly above average in the IQ test he did at the time. I would say that because he absorbs knowledge in his area of interest and has an excellent vocabulary he comes across as intelligent, but he is definitely not 'highly intelligent ' so no not every high functioning autistic person is of superior intelligence. He is 23 btw..

It's the weird juxtapositions of abilities and lack of abilities that really get me about my autism (I'm pretty high academic intelligence). Like "Has a 1st class degree: Can't remember a list of 3 tasks to complete unless written down" "Can navigate around new area easily having glanced at a map twice: Gets confused in Tesco" .... that kind of thing.

@AutisticPenguin? Are you sure you're not me? I spent ages walking around Tesco the other day because every time I went into an aisle I forgot what I was looking for and remembered something else I'd come for in a different aisle... rinse and repeat.

Yet last month I went on holiday for a week, alone, in a place I've never been to before, and had a lovely time. Which would challenge quite a few neurotypicals!

If you’ve had a private diagnosis can you keep it to yourself as I’m not have the gp/ nhs/social services etc aware ?

Yes penguin and chouetted!

School/college tutors: this child is brilluanr, she must go to oxbridge!
Me: completely average gcses, a levels and three failed degrees.

BUT, later in life, beasted a full time masters around a sizeable part time job because it was distance learning. I could organise my own time and wasnt locked up on a campus with people in a lifestyle i didnt want or like.

Boredom is my enemy, i need a lot of stimulation. Doing mydegrees at uni, i felt like i was twiddling my thumbs most of the time and tgat irritation builds until its like a constant roar in my head. Then i start trying to find my own amusement....when that doesnt work i just break down, quit, disappear in a puff of smoke.

Most low/entry level jobs bore/dont challenge me i suppose and you are micro managed - opportunities to climb have never come quick enough so i've hopped around to keep myself occupied. But that keeps me at the bottom.

AutisticPenguin said It's the weird juxtapositions of abilities and lack of abilities that really get me about my autism

But isn't that one of the things diagnosis shows, it's called a spiky profile. See the attached image, then add any sensory issues and other co-morbids to see what a complex presentation autism can be.

In my understanding, it's the individual combination of the high and low scores in specific diagnostic tests and the responses to the comorbids that makes each autistic person unique, hence the saying if you've met one person with autism, you've met one person with autism.

That's often why NT people like teachers can get autism so wrong, they expect someone who can do ABC easily to also be able to do XYZ because that's what they'd expect from an NT person. Autism and/or the co-morbids prevent the person doing XYZ but the NT person does not understand why or how that happens.

WhatAsituation when you are privately diagnosed, sometimes you need a GP referral just as you would for an NHS one, sometimes not. If you find someone to carry out a a private diagnosis without a GP referral, do ask if you can request that your GP is not informed of your referral or its results.
I don't know where a private consultant would stand on not informing your GP if you were diagnosed, because it is medical information, so please establish that with the private consultant before you go ahead.
If you want a diagnosis for yourself, just to know one way or the other that's probably fine, but if you want one to ask work or FE to make reasonable adjustments then you are going to have to give a copy at least to work and they may or may not contact your GP.

Welp, i finally got a job and im really hopeful. I have a great deal of autonomy and so far, really clear information on what is and isnt expected etc etc ...i dont like ambiguity.

Well done Bimwit! Sounds fab. Ambiguity is a nightmare. Good luck with it.