Starting the long process of getting a formal diagnosis...

[Danno]

So after years of trying to self-diagnose myself (I've now settled on thinking I'm definitely more likely to be on the Spectrum than not) I have decided the only way I'll know for sure, and therefore the only way I can really help myself cope with life and know what my limits are, are to seek formal diagnosis.

For those who have sought adult diagnosis (UK people in particular), what have your experiences been?

I plan on phoning my GP tomorrow to book an appointment to ask for referral on to a specialist (will need to research which ones in my area deal with adults). But apart from going to the GP and saying "I want a referral" I don't know what to say.

Is there something like a decent online test that I can print out after answering that can show my answers and also interpret what my answers mean in terms of potential diagnosis? All the ones I come across seem very brief and the results just say something along the lines of "Your score is X, which is above Y and therefore likely you have ASD" but doesn't show anything other than that - I kinda feel I need to show my GP justification for my suspicions as verbally telling them will no doubt be difficult...

Or can I just take in a hand written list of traits I've noticed in myself and show them to the doctor for them to read and go from there?

I've had a few episodes of mental health issues anyway during the course of my adult life, and although ASD would go some way to explaining a lot of it (especially the overthinking when trying to self-interpret symptoms etc), what if they turn round and say I'm just having an episode of health anxiety?

To be honest, I've been suspecting I may be on the spectrum for at least the last 8 years, and now and then (every 6 months or so) I get really obsessive trying to research it, but there seems to be very little out there about people's first hand experiences of the diagnosis process, instead just mentioning it as an event that happened - so I would be very grateful if anyone wouldn't mind sharing their adult diagnosis experiences (lead up to, the process itself etc) so I know what I might expect.

Thank you

 

[Pats]

Danno. Many here are self diagnosed and fine with that. Many here were diagnosed later in life - I'm not alone in being diagnosed very late in life (was 59). I always knew I struggled with things but thought I was the only one, since no one could relate to things I would try to explain to them - often questioning if I was even sane - but autism never even crossed my mind before. Once I read about female aspergers, it explained everything and I was no longer quite so alone in the world - there were other people out there like me and experiencing the same types of things. I did get the official diagnosis for a couple different reasons. Mainly so my kids would know and know the possibility of themselves or any of their kids being on the spectrum (which, also would have never occurred to anyone). The other, like you, was to help me know for sure. The article I read fit me 98%, but still unable to trust my own judgement. The only thing that doesn't really fit me is that I'm good at managing finances and time (although I had to learn those things and didn't start out that way).
I asked my doctor for a referral and she didn't know where to send me, so she sent me to a psychiatrist. He was more interested in my depression and treated me for that and had me see a therapist, too. The therapist - I brought in a book about aspie women and had marked the pages that I could relate to and when she seen all the paper tabs sticking out from almost every page, she set me up with an autism specialist for the diagnosis.
Even with an official diagnosis my siblings still are not convinced - they say I'm just me and have always been this way. (yes, because I've always had autism). But I also realize it might be hard for someone to think they've known someone all their lives and learn that maybe they didn't know them after all.
Anyway, good luck with your process and you'll find lots of support here.

 

[BrokenBoy]

Thank goodness you are formally getting diagnosed.

 

[Starfire]

My advice is contact your local NHS diagnostic team directly. If you go through a GP as the cost of the assessment etc will come out of their budget, and they don’t see a diagnosis as being a matter of life and death, they will do everything they can to put you off.

That’s what I did anyway, I filled in their forms after having talked to them on the phone first, and they said I qualified to go on the waiting list. I waited 6 months for an assessment and it was all fairly stress free.

 

[Danno]

@Starfire I've looked at the info on local NHS team's web page and they explicitly state they only accept GP referrals... There is a local private psychologist who specialises but who also takes NHS referrals - but again it has to be through the NHS process rather than going directly to him and effectively asking him to bill them afterwards.

 

[Starfire]

Oh bad luck! According to this -

Autism diagnosis for adults - National Autistic Society

“Some diagnostic teams accept self-referrals, but in most areas, you will need a referral from your GP.”

It still might be worth giving them a ring before your GP and questioning whether an adult self-referral is possible.

The NAS suggests this as regards approaching your GP -

EXPLAINING YOUR SITUATION
You could say that you've been reading about autism, or that you've been in touch with The National Autistic Society. You could say that you think you experience some of the difficulties people on the autism spectrum can face, and you would like to seek a formal assessment to be sure. Try to give your GP some examples of difficulties you've had in adulthood and childhood with communication, social interaction, sensory difficulties, friendships or employment, and the need for routine, and how much you think these affect the different areas of your life.

It’s very helpful if you take a parent with you to the assessment is that possible?

 

[Danno]

My Mum has agreed to go to the actual assessment with me - I might be able to get her to come to the initial GP appointment too.

When I was discussing with her the other day (I'd had a "bad day" at work the day before) the following morning we were discussing about what happened and I said I just got completely overwhelmed by noise/people standing too close/fluorescent lighting... and then just blurted out "I've been thinkihng about it for a while and decided I need to get tested..." - and then after that she spent all day reading up on it all, bless her, and came to her own conclusion that it would explain A LOT)

 

[Starfire]

That’s great Danno, parental support will be a big help. The diagnostic team will want to speak to her at length about your formative years and early life. They asked if I wanted to sit in too but I thought it better not to in case she held anything back with me there. I spoke to them separately.

Also, when I received my diagnosis they said my mothers contribution and help was invaluable and made the decision much easier to make. Sometimes, they needed to interview up to three separate occasions before a decision can be made, but in my case had no problem diagnosing that day based on the assessments.

 

[Gracey]

Hello Danno

I was referred by my (uk) GP practice in February 2018.

I am still on an NHS waiting list for initial assessment,
- that is an interview to check over some details before deciding whether or not to go ahead with a full assessment for Autism.


I have found a private practice within my county that can conduct an initial assessment for £300.
The full assessment costs a further £1500.
£1800 in total.
(accurate figure @Feb’ 2018)


Perhaps it’s worth considering what you’re able to achieve with a diagnosis than without

 

[Danno]

@Starfire On the subject of parental support, I've dropped a line to one of my Mum's friends, who's son was in the same class as me at primary school and who has Asperger's (or ASD - I know the date of diagnosis changes what "label" is put on it, but it's pretty much the same thing isn't it?). Anyway, I asked her about which doctor at our surgery is the best one to talk to about it, and turns out it's the most in demand doctor with a minimum of 2 weeks' waiting list who also only works 2 days a week - so going to plan an appointment for when one of those days coincides with a day off work because although my line manager has said there will be no issues taking time off for it, I know I won't be able to work any of that day because of how drained I'll probably feel in the run up to it and afterwards...

So I'm thinking of just using that extra time to write a proper list of reasons why I want a diagnosis and reasons why I am thinking I think I have it.

@Gracey That's a bummer. Waiting times here (Bournemouth) are apparently 6 months between GP and first consult, and then again 6 months until the actual assessment. I did look at the private route but don't have the funds and if I *did* for whatever reason need to produce evidence of a diagnosis at a later date, apparently an NHS diagnosis is preferred/essential for certain organisations who have been known to say a private diagnosis isn't a valid one.

 

[Starfire]

@Starfire On the subject of parental support, I've dropped a line to one of my Mum's friends, who's son was in the same class as me at primary school and who has Asperger's (or ASD - I know the date of diagnosis changes what "label" is put on it, but it's pretty much the same thing isn't it?). Anyway, I asked her about which doctor at our surgery is the best one to talk to about it, and turns out it's the most in demand doctor with a minimum of 2 weeks' waiting list who also only works 2 days a week - so going to plan an appointment for when one of those days coincides with a day off work because although my line manager has said there will be no issues taking time off for it, I know I won't be able to work any of that day because of how drained I'll probably feel in the run up to it and afterwards...

So I'm thinking of just using that extra time to write a proper list of reasons why I want a diagnosis and reasons why I am thinking I think I have it.

@Gracey That's a bummer. Waiting times here (Bournemouth) are apparently 6 months between GP and first consult, and then again 6 months until the actual assessment. I did look at the private route but don't have the funds and if I *did* for whatever reason need to produce evidence of a diagnosis at a later date, apparently an NHS diagnosis is preferred/essential for certain organisations who have been known to say a private diagnosis isn't a valid one.

Aspergers has been fazed out and replaced with ASD. There may be different countries with different criteria but my understanding is that is the situation, and you will often see those terms used interchangeably.

Definitely try to get an appointment with the GP you spoke of! Unfortunately, many GPs can be very dismissive, and lack understanding about Aspergers/ASD therefore a two week wait will be nothing in the scheme of things but might be the difference between you getting a referral, or not!

Have you told work about your suspicions and what you plan to do? If not, it’s probably better to keep it to yourself at this stage as nothing has officially been confirmed yet.

A proper list might be helpful but be minded that a GP doesn’t want or have the time to read an autobiography. Make it clear, concise and to the point so they can speed read it and get relevant info. This might be a huge deal to you, but its not to your GP, they are on to the next patient as soon as you walk out the door. (I hope that doesn’t sound harsh or critical to you.)

 

[Progster]

I was diagnosed in the UK in 2012. I had a private assessment arranged after a GP referral, and in general it was a positive experience.
In order for the GP to refer you, you need to show some proof that your ASD is affecting your life and functioning, in areas such as work, social communication, daily living and relationships. I think my GP used a ten question screening test or check list, and she asked me why I thought I had Asperger's, if I had any learning disabilities, if I was employed and whether I had any difficulites with employment, about relationships. My mum was with me, and she asked my mum if she agreed with my opinion that I have Asperger's. My mum said that she did agree, and that helped a lot: the GP agreed to arrange a referral for me. We decided to have a private referral rather than go on an NHS waiting list, in order to speed up the process so I could get help faster. It took five weeks until my assessment, then a further two weeks for the diagnostic report to come through. I had also prepared some notes as to why I thought I had Asperger's and how it was affecting my life, but in the end I didn't need it and you only get about 10 minutes with the GP anyway, so not a lot of time to go into detail.

 

[Danno]

I told my line manager last week because in my experience the sooner you let employers know (even if nothing is definite) the more understanding they're likely to be if you need to ask for a favour - an extra few minutes break or changes to work situation etc.) She was really supportive and has offered extra help if I do need to take it.
Turns out the days the doctor I need/would like to see at my GP are ones I'm not actually scheduled as days off for at least the next few weeks so thinking of trying to book a day off as annual leave for it... I know I can take time off during a working day but with a 45 minute bus journey each way to contend with as well as the feeling I won't be able to cope with working on the same day, I would much rather do it on a day I don't work.
But that does mean I have at least 14 days (holiday request minimum time frame) to get my head together. Been a massive case of overthinking things the last week or so

 

[Starfire]

I told my line manager last week because in my experience the sooner you let employers know (even if nothing is definite) the more understanding they're likely to be if you need to ask for a favour - an extra few minutes break or changes to work situation etc.) She was really supportive and has offered extra help if I do need to take it.
Turns out the days the doctor I need/would like to see at my GP are ones I'm not actually scheduled as days off for at least the next few weeks so thinking of trying to book a day off as annual leave for it... I know I can take time off during a working day but with a 45 minute bus journey each way to contend with as well as the feeling I won't be able to cope with working on the same day, I would much rather do it on a day I don't work.
But that does mean I have at least 14 days (holiday request minimum time frame) to get my head together. Been a massive case of overthinking things the last week or so

That’s fine you need to do what is best for your situation. I booked a day of annual leave too, I never ask employers for a favour, I don’t want to be beholden to them or for them to ask an unreasonable favour in return, but that’s just me.

I haven’t told my employer about my diagnosis as it’s my business and there is no legal requirement to do so. My ASD does not interfere with my job and I don’t want accommodations so I see so reasons to disclose at this stage.

I also didn’t tell them because it would be noted on my work file. Were I to apply for work somewhere else I don’t want it mentioned in a reference, or inadvertently in a phone call to my potential new employer.
Your boss sounds great but I can assure you many are not, and the accidental mention of ASD would be enough to put many employers off, unfortunately.

 

[Danno]

Tbh it's only through working where I do (as opposed to the supermarket job I was slaving away at for 7 years before) that it's really highlighted certain difficulties... Let's just say that although I'm coping (some days better than others) I'm not sure if I had to apply for call centre work again that I would go for it. But I'm settled (ish) now so... But yeah the company I work for puts a really emphasis on staff wellbeing so there is that to be thankful for But yeah, because of the potential for it to get in the way of my work I felt it only "right" to declare it up front rather than at a much later stage.

On another note, can only book upto 2 weeks in advance with my GP which I didn't realise, so have gone for an earlier morning appointment on a day I have a late shift, and my manager has said as I don't know at the moment what frame of mind I'll be in afterwards that I can just call in if I need to.
But the positive take on that is I'm now well on my way to taking the first step towards getting things sorted. That's me all over... Planning even such things as how to prepare for something starting. I need something like a 6 month period of getting used to the idea of something first usually!

 

[Danno]

I think everyone (even some NT people) would prefer to be "normal" i.e. Mr or Mrs Smith who wears brown shoes, works 9 to 5 and so on - whatever boring average that could possibly be made if you were to look at humanity as a whole.
But being diverse means bringing a different take to things - I've come across quite a few stories in my research about how people have turned things around and use their diversity to excel in areas perhaps NTs wouldn't.
Even if the results come back as negative, and it just turns out I'm an oddball eccentric enigma-unto-myself, tbh I'm not sure I want to change *too much* - just to improve, not to become something/someone I'm not. I look at the people around me and sure I get jealous of the relationships and friendships they have, and all their other life achievements, but at the same time I'd rather be "me" than someone else.

 

[Otenba]

Husband was one who thought it was worth finding out after doing training at work to support autistic customers and we went to a GP to be referred. Wasn't challenged so referral went and the initial forms to complete turned up in the post not too long after. They were happy to assess me.

I started the assessment waiting process back in May 2017 when the autism assessment people said they'd see me in 18 months but to be aware of backlog. I was made higher priority in October 2017 due to my employment circumstances at the time, though clearly that doesn't mean much since 18 months have passed already and still no assessment appointment offered. I reassure myself by knowing the national average wait is 2 years, so I hope by May 2019, I'll at least know of a first assessment appointment date.

Hope your experience getting your assessment is more positive than mine. Probably will be if you don't live in East Anglia.