Diagnosis for adults

Max Horne, who has Aspergers, photographed by Robin Hammond

Diagnosis in adulthood can be a mixed blessing and some people decide that they are happy with self-diagnosis.

The usual way to get a formal diagnosis is to go to your GP and ask for a referral to a psychiatrist or clinical psychologist, preferably one with experience of diagnosing autism.

Here are some tips on how to present your case so that your doctor can see why you might have Asperger syndrome and why having a diagnosis could be helpful.

(In this article, the term Asperger syndrome or AS includes all forms of high-functioning autism.)

Talking to your doctor

Getting a diagnosis can be difficult and very few adults find it easy. You are the only person who can decide if this is the best choice for you.

Make sure the diagnosis is the only thing you are seeing your doctor about. If you try to drop it into a consultation about another subject, they may not address it fully. A good way to bring up the subject is to mention that you have been reading about autism or Asperger syndrome or you have been in touch with the National Autistic Society. 

Describing your experiences

AS is characterised by the triad of impairments. People with AS will be affected in some way by each of these impairments. The autistic spectrum is very broad and two people with the condition may have very different symptoms. No one will have all the traits but most people with AS usually have problems in the following three areas.

Social communication: difficulty understanding gestures, body language and facial expressions, a lack of social motivation and difficulties making friends.

Social understanding: difficulties in group situations, problems understanding double meanings and jokes, and choosing topics that are not appropriate to talk about.

Imagination: difficulty with imagining alternative outcomes and finding it hard to predict what will happen next. This frequently leads to anxiety and can show itself as:

  • an obsession with rigid routines and severe distress if routines are disrupted,
  • problems making plans for the future, and 
  • problems with sequencing tasks.

Secondary traits of Asperger syndrome
People with AS tend to have difficulties which relate to the triad but are not included within it. These can include: obsessive compulsive behaviours, obsessive interests in just one topic, social phobias, acute anxiety, depression, social isolation and clumsiness, often linked to a condition known as dyspraxia.

The doctor's reaction 
You don't need to describe every single one of these features to your doctor. Your doctor may be more likely to respond if you give one good example from each area of the triad. Once you have explained why you think you have AS, show your doctor the National Autistic Society’s website.

If your doctor disagrees with your argument, ask for the reason why. If you don't feel comfortable discussing their decision there and then, ask for another appointment to talk it through.

Why you may need a diagnosis

Diagnosis in adulthood can have advantages and disadvantages. Some people are happy with self-diagnosis and decide not to ask for a formal diagnosis. For those that do want a diagnosis, there are a variety of benefits.

Understanding yourself
Often, people with autism have known that they have specific difficulties for a long time without being able to explain them. They may even have been misdiagnosed. A firm diagnosis can be a relief because it allows them to learn about their condition and understand for the first time why they have difficulties.

Gaining the understanding of others
Many people suffer the consequences of being constantly misunderstood. Often, the fact that someone has AS can lead to teasing, bullying and social isolation. When the people close to you understand that there is a reason for your difficulties, it is much easier for them to empathise with you.

Receiving the right services for your needs
Adults with AS may need support with day-to-day living. Once you've had a diagnosis, you can access autism-specific services, such as the Prospects Employment Service that is run by the National Autistic Society.

Joining the AS community
It can be helpful to meet other people who have the condition in order to learn about their experiences and share your own. There are some support groups available for this, such as Asperger United, which publishes a newsletter written by people with AS for people with AS.

You can find more useful websites about AS on the National Autistic Society's website. You do not have to have a diagnosis of AS to get access to this support.

Last reviewed: 25/02/2008

Next review due: 25/02/2010

What are these?

Dave-999 said on 22 July 2009

Ok, sorry for the double posts before but here goes my story;
I'm a 28 year old man who from school age always knew he was different, my friends were few and far between and I ended up hating school because of all the bullying, be it physical (sometimes) or mental (usual).
I've always felt like an observer or outsider and it felt few understood me, in fact, one of the people who did I have a great admiration for!
Anyway, parents came up to see me and my brother like you do, and they had a dvd with them which i watched and shortly in i realised why i was watching it, over the next week i took an asperger test (50 questions, multiple choice) and scored very high, over 40 and after a few minutes with my gp, she said she'd write the referral letter, I suppose what i want to know is useful sites, NOT NAS, i've seen all that and its really a shopping site but if people on here are allowed to post safe links, it may benefit us all.
Anyway, the only thing on my mind is its been 2-3 weeks and i've heard nothing, patience is not a strong point, i've heard 4 weeks is the usual target but i want to (nicely) find how my referral is progressing

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Dave-999 said on 22 July 2009

@ Sue, firstly i'd like to say i totally understand what you had as a child, i had the same and also my friends got bullied really badly just for being my friends.
Secondly, the old gp is wrong, i know an adult who has been diagnosed!
Ask to see your doctor and get referred, its daunting to do (i've done it) but i'm so determined to get this done and i was happier that i've taken the 1st step!
Keep at it and keep your spirits up best you can, mine are so-so waiting for the next stage.

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Dave-999 said on 22 July 2009

Stiivyn; if employers are treating you like that, they're in breach of the disability discrimination act! If you could prove it (considering employers MUST tell you why you've been unsuccessful) then your local MP would be very interested as would CAB (Citizens Advice Bureau)

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Dave-999 said on 22 July 2009

Just to say polkadotpants, my understanding of AS (i'm reading all i can while i wait for referral to come through, i'm that worried) is NO gp can tell you that you don't look as though you have it, if any gp said that to me, i would doubt their competancy!
What I have read is perhaps friends and family can help in the decision making, people who have known you a while may need to be contacted to give a character reference, other thing is, what can you do private? Anything?
Just for information, this month I saw the featured dvd on NAS website (the £20 one) with my Mum and Eldest brother, long story short it had been borrowed from a family friend who had been diagnosed recently and i watched it and have to say, could identify on most things there, so i wait now (my Doctor said she would refer me to the clinical psychologist) and yes, its irritating!

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TheKLF99 said on 22 February 2009

You can get a diagnosis of AS as an adult, it does take a while but all it needs is an understanding Dr. I got dx'ed when I was 22 and since then things have got a lot better. Some private run AS groups will allow you to join without a diagnosis, I was with WAspS for about 2 years undiagnosed. Even if you get diagnosed though the amount of support NAS supply is very minimal. Before I was dx'ed I was messed around a bit because the Dr didn't know who to send me to, the only psychologist in Warrington that dealt with AS only dealt with AS up to 18 not adults. In the end NAS give me a list of Dr's in the area that would help and my Dr got me referred to a Professor in Sheffield who diagnosed me. There are quite a number of things though that do help after getting a dx, you can claim DLA, you can get a free bus pass, you can get help from the DEA when looking for work, you can enter the New Deal scheme early. If you go to college even for a night course you can get extra time in exams or help from the tutor. Most places that have concessionary rates will allow people with AS in on concessionary rates. Workplaces have to be more understanding and be very careful before sacking you or else they could be done under the DDA. One major problem I have is timekeeping as I have the ADHD side of Asperger's as well and easily get distracted, if it hadn't been for the diagnosis I would have lost numerous jobs in the past due to me turning up late a lot of the time.

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taran0 said on 06 February 2009

all the information on ASD and all the organisations are useless, you can't get no help whatsoever. I rang autism west midlands, NAS, ASD careers support and they wont even talk to you unless you have a diagnosis.

I have been having a lot fo problems in work situations and dealign with people and socialising, it was gettign to tthe point that i might lose my job due to communication problems. and i could only work part time, despite being proficient at my job.

i went to my GP he said theres nothign wrong with me and didnt have a clue about ASD. I eventually forced him to review me to the mental health team adfter seeign two diferent psychologists who didnt have a clue about ASD, referred me to join a confidence building course. i refused and said that i need a diagnosis so that i can get support in my carreer.


while all this was going on i was let go from work, I got a letter from the mental health team saying i was being discharged and that they think I MIGHT have ASD.

its all been a waste of time and now i am back at square one, it might sound like a bit of a rant but,
so much funding so many organisations setup, whats the point where none of them can help you, they just talk to you over the phone and tell you to contact someone else.

it just defeats teh object you are dealign with peopel who have problems communicatign and then you fob them around all over the place to places and people they are not comfortable with.

the provision for autistic people is a joke, you cant access services unless you get a diagnosis and you cant get a diagnosis because most gps and psychologists don't have a clue what it is.

i have stopped bothering and just trying to deal with it myself now.

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Polkadotpants said on 05 January 2009

It saddens me so much when I hear how hard it is to gain a solid diagnosis; I myself have been living with Asperger's since around 6-7 years of age and now in my adulthood I'm expriencing many difficulties relating to sensory overloads, it's gotten so bad that I only leave the house to do my shopping, I suffer bouts of terrible depression and to top it all off my GP stated I don't look like someone with Asperger's - yet after a second oppinion I scored high on a question based asessment. My son has been diagnosed and it is thought my 1 yr old daughter has it too - also my brother, though he is happy with self diagnosis. I feel as though I'm sinking into a horrid nightmare where I can't always make sense of things, people seem odd and whose eyes I can't bear to look into, once harmless noises bring me crying out to my knees with my hands over my ears, it's like having your head stuffed with cotton wool and looking out through a veil sometimes - I'm an adult with Asperger's whose mental state has been allowed to fester to a point of desperation. What do I have to do to prove it, to be given the basic right to some kind of closure? I'm pleading for help and yet nobody has taken me seriously. The NHS need to address every last GP and ensure they know the signs, that they can be missed if not properly asessed, that girls are typically not diagnosed until later life as they can 'fake' sociability better than males, and subconciously hide their problems or shift attention away from them. I don't know how much longer I can live like this, it feels as though I'm on the edge of sanity. What else can I do but hope he sees fit to refer me at the next appointment?

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Stiivyn said on 05 September 2008

I was diagnosed last July, aged 39. I was referred to Cambridge Lifespan Asperger's Syndrome Service (CLASS). They do demand that an informer (parent or elder sibling) take part in the diagnostic process. However I can't say that anything has changed much after diagnosis. I am declaring my diagnosis on my CV and it appears to scare every employer off, even for volunteer jobs, so I think it's better to keep quiet about it.

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Anonymous said on 28 July 2008

I have had the same problem as sue, i have been unable to attain a diagnosis on the nhs, so i have had to go private. I'm at university and need a formal diagnoisis for help, plently of nhs psychologists have said yes you have aspergers syndrome but none have been able to formally diagnose me, it just seems there is no one in my area willing to take on my case.

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Anonymous said on 09 July 2008

I am a 35 year old woman, with 5 children, 3 of witch have been diagnosed being on the Autistic spectrum. I feel though when I read about the condtion, I am reading about me. I led a pretty friendless childhood and was constantly bullied from junior school right through to the end of secondary school. Acedemicaly I was average, but I never put any effort in and possibly if motivated would have achived much more. I always felt I got on much better with the adults when I was a kid. I asked a former GP what they thought about my case, as I do tick many of the boxes, but the reply was that adults cannot be diagnosed. Have I been told wrong? Is it worth my while trying again? Sue

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