Adult autism- how to get diagnosis?

I have too have had real problems getting my diagnosis at 56 and I hope in light of my experience these comments may be helpful

1. if you already have children on the spectrum (I have two!) please remember that the diagnostic process for adults is totally different, it is not a multi-agency assessment but rather a one to one consultation(s) with a neuropsychiatrist which primarily looks at development through childhood to adulthood.

2. The first formal step I took was to do the online AQ test TWICE six months apart (I got 49 on each!), my thinking of doing it twice was to reassure a GP that the results were not skewed by whatever was happening currently in my life at the time I did the test

3. Having done the AQ tests I printed out a lengthy folder of paperwork that included the following: the AQ test and scoring chart, my AQ test results, some papers online indicating the validity of the AQ test as a useful incicator of ASD etc, a detailed history of my social and communication problems since childhood ESPECIUALLY from ages 5 to 20 (this seems to be an important age range)  I also printed out a number of learned papers I found online which discussed the importance of a late diagnosis. I also made a point of printing out the Guidance to GPs for patients asking for an autism diagnostic referal as an adult ( this is freely available online) and also (as a backup!) references to the Autism and Equality Acts should I need to throw them at the GP to presurrise him! 

4. Having made a GP appointment I arrived armed with over a 100 pages of stuff all cross referenced and bound up. Because I had clearly done so much preparation I was able to convince the GP that      a) I was serious about seeking a didgnosis     b) I had done my homework by both looking at my history and doing the AQ test         c) I had considered the reasons why a diagnosis was important to me and          d) I was aware of the legal requirement of the GP to make an appropriate referral.

(might also be useful here to see just where a GP would do  a referral to!)  The general idea was to give the GP the impression that this patient was serious about seeking a diagnosis and was not going to take no for an answer! Incidentally the presence of wiritten notes calmed me and made sure I would not let my anxiety overwhelm me!

5. IMPORTANT BIT - having made a referral I needed to wait over 18 months to get appointment with neuropsychiatrist!

6 As some of you  who have posted have already pointed out a great deal of this consultaion will be the neuropsychiatrist taking a detailed history, particularly of childhood and progression to adulthood. For those, like myself where because of our age our parents are no longer with us it is critical to spend time thinking about this period in our lives and re-examining what happened in light of possible ASD, try to recall when we first walked, talked and in particular what games and toys we used in childhood. In order to be clear and calm I printed up a 20+ page detailed document showing      a) as many childhood developmental stages as I could remember         b) any aspects of these which either myself, my peers or parents/guardians thought unusual at that time         c) similar history of early adulthood           d) a list of problems I am currently struggling with           d) personal comments about the importance of a dignosis to me at this time.

Remember the neuropsyhistrist is familiar with dealing with people of the spectrum and should have no problem lettiing a patient take as long as they like during the consultation to consult and read from their notes.

7. In my case he gave me the result immediately but it took some time for the paperwork to arrive.

classic codger said:

Hi 'socks

Apologies, but I'd have to betray some confidential information to qualify that statement, but I'm sure you'll understand that I can't really breach the trust. I'll withdraw the comment if you can't accept it on faith. This person will be reading these pages, and I would be in danger of causing them great anguish if I gave any more details, because they would undoubtedly recognise theirself.

I think you've got it when you ask 'were they gaming the answers?'. Yes, I believe so. You are correct of course - a high score indicates AS, but for me, that also leaves the possibility that a low score doesn't necessarily indicate an absence of AS.

I say this because the person has adopted many 'masking' behaviours, and because I've known this person for a very long time. I was honestly able to put my hand on my heart and tell them that their answers did not accord with their reality, and when I gave examples, they readily agreed, much to my surprise I have to say.

This person is female, and having read what women have to say about themselves on these pages has given me greater understanding of, and compassion for, her behaviours and masking tactics. I would hope that AS woman reading this might possibly understand what I'm saying a lot easier than blokes will. Questions or comments, please ladies?

I don't want you to reveal anything more about this individual and have no reason to think that the conclusion you have reached is wrong. A couple of points for people to consider in this situation.

Firstly, when I was first diagnosed I thought that I could see it in a few people I knew. I started to spot ASC everywhere. I even got some of these people to take the aq test. I got some others to take the test out of curiosity to see how my "normal" friends would score. One female individual who I was convinced was on the spectrum scored 16 or 17. Some of the "normal" people scored in the mid to high 20s. My main conclusion from this was that I was fairly hopeless at identifying personality types in general and autism in particular. This isn't in the slightest bit surprising given the nature of the condition which indicates an inability to relate to or decode the social signals transmitted by people. I have spent more time since then, trying to make a closer study of people without coming to any judgement about their personality types.

Secondly, there are a lot of diverse types that are different to neuro typical (whatever that is). One of these variants is autism but there are many other conditions or just unusual personality types that might in some eyes look like autism. We are not qualified or trained to know all of the tests or traits to look for that would allow a professional to make a differential diagnosis between ASC, PDD-NOS, borderline personality disorder, bi-polar, non clinical introversion, shyness, no disorder of clinical significance. I'm quite comfortable that the person who I thought had autism does not have autism, some of the people who went along with the test turned out to be on the spectrum but not in need of any help (not surprising as it was an IT dept). One person, who I just had no idea would be on the spectrum said that he was entirely comfortable that he was on the spectrum and had been aware of it from his schooldays.

Finally, reviewing the interpretation guidelines on the aq test site

• 0-11 low result – indicating no tendency at all towards autistic traits.
• 11-21 is the average result that people get (many women average around 15 and men around 17)
• 22-25 shows autistic tendencies slightly above the population average
• 26-31 gives a borderline indication of an autism spectrum disorder. It is also possible to have aspergers or mild autism within this range.
• 32-50 indicates a strong likelihood of Asperger syndrome or autism.

The only group here to have no autistic tendencies is the first group. Most people fall into the second group. That is to say that it is entirely normal to have some autistic traits. Perhaps this suggests that we are not as different as we sometimes think?

Of course it is possible to game the scores, I would only comment that this might go against the tendency of people with ASC to be brutally honest!

Hi all,

We always value insights and experiences shared here though given the way the tone has turned quite negative and critical recently (in some of the posts) we thought it necessary to remind everyone of the community rules. Such posts do not create an atmosphere where people can share openly.

I can assure you that our moderators definitely do 'get it' work to resolve issues on the community in the best manner possible. As this post was about diagnosis posting advice from our website was a helpful addition to the conversation.

We look forward to your cooperation.

Avi

Hi 'socks

Apologies, but I'd have to betray some confidential information to qualify that statement, but I'm sure you'll understand that I can't really breach the trust. I'll withdraw the comment if you can't accept it on faith. This person will be reading these pages, and I would be in danger of causing them great anguish if I gave any more details, because they would undoubtedly recognise theirself.

I think you've got it when you ask 'were they gaming the answers?'. Yes, I believe so. You are correct of course - a high score indicates AS, but for me, that also leaves the possibility that a low score doesn't necessarily indicate an absence of AS.

I say this because the person has adopted many 'masking' behaviours, and because I've known this person for a very long time. I was honestly able to put my hand on my heart and tell them that their answers did not accord with their reality, and when I gave examples, they readily agreed, much to my surprise I have to say.

This person is female, and having read what women have to say about themselves on these pages has given me greater understanding of, and compassion for, her behaviours and masking tactics. I would hope that AS woman reading this might possibly understand what I'm saying a lot easier than blokes will. Questions or comments, please ladies?

NAS18906 said:

On the separate topic of Longman's complaint. Longman wasn't the only one to think the moderators reprimand was off target. Yes the thread is about adult diagnosis but the individual situation had progressed beyond the basic topic to what do you do when you get fobbed off by the specialists. Having said that, we don't know about the moderator's situation. They may be struggling with their ASD if they have it and after all they are volunteering for a charity. I would ask everyone (including the mods) to stop and think before making longman feel even more embattled.

Here, here!

It made me feel I should not be able to speak my mind freely for fear of transgressing some subjective measure of acceptability.

On the separate topic of Longman's complaint. Longman wasn't the only one to think the moderators reprimand was off target. Yes the thread is about adult diagnosis but the individual situation had progressed beyond the basic topic to what do you do when you get fobbed off by the specialists. Having said that, we don't know about the moderator's situation. They may be struggling with their ASD if they have it and after all they are volunteering for a charity. I would ask everyone (including the mods) to stop and think before making longman feel even more embattled.

Another aspect of this is the depression that this person has fallen into. This will make the person think there is no point trying to do anything about it. He is angry and embattled and has been receiving lots of messages about how broken he is. it will not be easy (but not impossible) to get through that fog of resistance to get him to a reasonably rational state of mind where he can see some real options. Happispirit should probably take advice on how to deal with someone with depression (and autism).

CC: The person who scored 17, how do you know that they have ASD, were they gaming the answers to avoid diagnosis? Otherwise, I agree that 42 isn't anything like an official diagnosis but it is so far from a normal score that it suggests a "strong likelihood" of ASD according to aspergerstest.net/.../

Hi happispsirit, please excuse me for a moment whilst I carry out an essential task.

Hi Longman

Nil carborundum illegitimi

CC

So, back to the thread. An EQ test score of 42 is meaningless in itself, but is good information to contribute to the diagnostic process. I know someone with quite severe ASD who scores 17 on the test - the results depend very much on the honesty (with him/herself) of the person answering!

With that, evidence from you and evidence from his Mum, you shpould at least be getting an appointment for a proper professional assessment, but unless he takes on board that there are serious issues to address, he isn't going to co-operate in the way that he needs to, and that's a great pity.

Whilst none of us on here are qualified to give an opinion or a diagnosis, the fact that you are here and describing pretty much our experience and the way we behave, indicates to me that you're not wrong about him.

Getting a diagnosis doesn't change the condition. Medication doesn't change the condition, and for my part, having spent a lifetime being given totally useless and innapropriate medications, I can say that doling out tranquilisers etc is an insult - it tells me that my doctor isn't listening or paying attention to the things I am unable to express, but am trying to. It is incredibly frustrating.

Unless your husband can find the strength to consider his position, it will not change. You can lead a horse to water... The problem is that instead of saying to someone 'you might be a different sort of person', our society says 'poor you, you poor little disabled person who is outside of mainstream society' etc etc. This negative picture is, understandably, one that people shy away from. You'll typicaly hear 'there's nothing wrong with me, it's everyone else that's the problem' or some derivative of that.

It takes a particular mindset to be able to say that one's life is all wrong, and to try to find out why. If you look at the moderator's message to Longman above, for instance, I see someone who thinks they 'get it' but doesn't have a clue what it means to 'be it'. And that's the real problem - we live in a world where people are incapable of understanding what it means to live as an AS person, just as we have no idea what it is to live as a non-AS person. If you want to understand someone's life, step into their shoes, as it were. NTs claim to have this ability, we, as is shown, do not. I know that I don't, so it's impossible for me to know whether non-AS people can. I wouldn't have thought that this would be a difficult fact to grasp.

Your husband clearly has difficulties, if your reporting is accurate (I stress that I accept everything you say as true) but if he cannot accept our assurances that a formal, positive diagnosis WILL change his life for the better, there is no start point. He isn't disabled, he isn't a failure either as a man, husband or father, he is locked behind a typical barrier of male ego. Been there, done that, decided it wasn't working so opened my intelligent mind to other possibilities and now I'm here talking to you. It still took one other person to get through to me, and that was my caring, observant GP. I only listened to her because I believed that she cared, and after a lifetime of the opposite experience with the medics, that was a tough call on me.

Strange and bewildering things happen to us. We are all, from time to time, ashamed and embarrassed by our own behaviour. It takes a lot to admit it, let alone talk about it, but when we do, we find out that it isn't just 'us'. If you can persuade your husband to come onto this website and talk about himself (and do remind him that we are anonymous so he is SAFE here) then perhaps we can help persuade him to take a new look at himself. But, no-one can help someone who won't help theirself, and that's the first hurdle.

You sound like a good person, and I'm sorry that you are in this position, but I respect your determination and admire your courage. Astonishingly good luck to you - wonderful things DO happen.

Hi random,

This is one of the ways that it works in most places - if you are managing (even if it is only just) then you don't get help. If you really start to drown then things can happen. I've been there too (sobbing in the drs surgery) but there are things to be done and you will come out the other side in one piece.

You aren't alone and you should keep posting here to get extra help.

I have had a big crisis Today, and looks like I may be getting some help after all this time, I think my diagnosis has helped with that, dont like to say for sure until it happens.

Hi Longman,

We value your input, however, the tone of some of your recent posts is coming across quite critical and judgemental.

Our volunteer moderators do a great job of trying provide relevant advice where possible and deal with issues that posters like raise. The answer Sofie has provides information on diagnosis which is what this thread is about.

Comments like the following don't help: "The keepers are coming to change my straw, so I'm off air for a bit..... what am I on about?....well at times I do feel like an exhibit in a zoo in here............  Don't just run a forum, learn from it."

We ask that you refrain from coming off judgemental and over-critical. Please try to keep things constructive.

Take care,

Avi

A score of 42 leaves very little room for doubt. Equally, it doesn't mean that he should be disabled by it. I score 40-42 and my life has been affected but not blighted by the condition.

It would be good if he can understand that knowing that he has the condition can be a positive revelation. I felt a tremendous relief when the diagnosis was confirmed as it meant that I had an explanation and that there was a way forward.

What does he think about the situation?

I found that reading the Valerie Gaus book made so much sense to me (I read this before diagnosis) that I was more able to accept that a diagnosis was more likely and that it was possible to have a positive and fulfilled life with the condition.

Undiagnosed people with the condition can be abusive and also have poor prospects of maintaining their marriages. The social costs of nondiagnosis can be enormous.

What does your GP say about the situation? Does the GP know anything about autism in adults? If not then it may be worth finding a GP that does understand it.

:( :( :( following the link and talking through it with him, he scores 42, I will just keep pushing. I have really got nothing left to lose, except my sanity, which is mostly gone at this point! 

I see some really good advice here, and basically I just need to keep pushing. 

I want the diagnosis for both our sanities, I have already got our eldest confirmed as ASD and there are times in my house that I am surprised that murder has not been commited, I have a 40 yr old a 15 yr old and a 13 yr old who are completely incapable of expressing themselves or indeed reacting to each other in a way that doesnt end up in a shouting match. 

I have tried in vain to get us a social worker, which took up a whole week of my life, several 100 phonecalls and alas, still no help. 

When I went for counselling and when I speak to people about what I deal with everyday , they shake their heads as to why I withstand the behaviour which is basically abusive. I love my family dearly but I cannot cope any longer without them understanding themselves. 

My husband cannot or will not work , he hasnt done for over 7 years! when he did work he never supported me or the kids, his money was his and he did as he pleased. 

He doesnt cope well in house, having days where he wont take his medication for whatever paranoid reason he comes up with, the half an antidepressant he does take seems to be more of a placebo effect ( completely independantly this was picked up on by both his doctor and pyschologist, I will add) than it is actually an aid. 

He can barely cope with a trip round morrisons wthout wanting to ram his trolley into someone! 

I walk on eggshells with what mood he will get up in, somedays he is the nicest person you will meet but more than 85% of the time he is totally selfish, self rightous, incapable of adult conversation, comprehension or thought. He can just about cope with the routine for the younger 3 children, ie school runs and meals once they are home, but he frequently gets anxious, stressed or angry over things - even having quite stern words with teachers over very trivial things. Any thing more than the basic routine is my job. 

He will throw things or be aggressive, and although he has never hurt anyone on purpose, he did fracture his mums leg a few years ago when he launched a toy across the floor and it hit her in the shin! All because he was cross over standing on a smaller childs toy! 

I worry so much that something will happen whe I am not here but I cannot allow him to hold us back as a family any more. I have taken up a degree course this september - purely because he will not ever be able to support us and I cannot bear another minute on benefits trying to keep my sanity - I have been unemplyed for the last 3 years because of my own health. 

I just want it there, in black and white, so that he will perhaps have a reason to look beyond his current state of mind, that being - that he is useless, old and 'just an angry person' who 'noone cares about' which just isnt true! Perhaps with a diagnosis he could find a sympathetic employer who can support him back to work. Maybe i can access some more support or indeed at last hear the truth that I was not living with a monster for all this time and that he really is the loving, considerate person that I see on occassion and know deep down that he is - I have slowly over the last year managed to get him to see that but he still will not accept it from me. 

I deal with all the forms, escort him to doctors appointments ( he wont go alone he may as well be a recluse tbh, aside from occassional days out when he is accompanied by myself, he would never take the kids out on his own , further than an empty local park), His mum has offered up valuable information on his behavour as a child, that being he didnt sleep for 4 years and displayed an awful lot of ASD, OCD, ADHD issues even at an early age.

He ended up in hospital with indegestion a few weeks ago because he convinced himself it was a heart attack and had an anxiety attack, the proceeded to continue having them throughout the night and shout at the nurses for their incompetence while he apparantly 'couldn't breath' - it was highly embarassing! I have found myself on the wrong side of his temper when he has threatened to drive himself into trees or off bridges, he is so uttery convinced he is a failure that I cannot seem to get him past it. 

I just need help before I have to give up on him, because that will not end well :( 

happispirit said:

the mental health team who basically have said, yes it could be your ASD

Was this actually a statement that they acknowledge that he has ASD. Were they saying that the ASD could be responsible for his depression etc?

Has he taken the free online test at aspergerstest.net/.../ This is a respected and useful indicator. Several people on the forum have mentioned that GPs have taken them more seriously when presented with the score.

PIP and other benefits do not automatically come from a diagnosis. They depend on the severity of disability. Not all people with ASD are disabled, if you have a formal diagnosis then you get protection from Equality Act but that is the only thing that follows automatically.

What is his work situation? Is he able to work?

I think Asparagus's attitude demonstrates that it is possible in some cases to take a positive approach to diagnosis. Everyone on the spectrum is different so this may be difficult or impossible for some people due to other issues. Taking control of who you take notice of and who you don't can be one thing you can do to improve things.

As Adults I am very much dependent on those who are willing to help.  People who put me down, am learning to walk away from. People who help me to feel good, am learning to accept them. They are able to help me in the way I need the help as and when, not just that am being stubborn or awkward or moody or, but something else is really happening and life for me has improved with a formal diagnosis. Am not talking about financially, as that is a different story but personal well being and feeling good has been a lot better. I kind of depend on others for feeling good but working out who will help me and who likes to exercise their limited power by being authoritative, I walk away from as they are not helping but good at putting one down and not helpful. But one doesnt need a diagnosis for that officially but it has made an enorumous different being able to say am autistic.

Can I suggest you write to local MP and put the whole situation to them?

I guess I was very lucky at 45 both my parents are still alive and sound and my mum came with me to the first diagnosis session. She also had to fill out a 'questionaire' about my childhood days. And I have plenty of other health issues to help confuse the situation for them.  The second session was spent 'at play'.

The MP may not be able to do anything but they can influence people more than they may realise but when they start sending out letters to organisations asking what is happening with the pacific case, that can at least make them answerable for their actions why your husband keeps falling through the net as it 'were'. It may be they haven't the capacity to meet the needs of someone who don't go out, but they should simply say so rather than cover it up. Do what they can to actually help rather the write them off. 

Sorry to say, that I got my diagnosis earlier this year, one of the reasons was to get some help with anxiety, depression, and struggles. I think it is fair for me to say that is has not made any difference to me in regards on ongoing help. All the local help and services are geared to children, or at best someone transitioning in to adult hood. I must say the autism diagnostic service I am with have been very good, but know that I am only with them for another month or so at best.

Don't expect the kind of help you are getting for your children will be available for your husband with a diagnosis.

Forgive me for contradicting, but both happispirit and Parkin82 are trying to get diagnosis for someone other than themselves, and happispirit (see original post) has been through this process already (I don't know whether it was a referral through the GP though).

The trouble is it aint working for adults. Despite Government (or semi-governmental) recommendations that all adults should be able to get a referral through their GP, frequently they get passed on to mental health services, rather than the correct route to an autism diagnosis service, who seem unable to cope or respond properly (see replies from various people above).

The latest edition of Your Autism Magazine has run a spotlight page on the support this forum provides. It doesn't uphold that image if the Mods keep giving standard advice that indicates they haven't read what people are explaining.

Many adults are being denied a diagnosis. Brush offs from GPs and Mental Health, such as happispirit describes (too old at 40!) are happening way too often. People aren't getting the help they are entitled to and the NAS webpage doesn't seem to recognise the collossal shortfall.

The keepers are coming to change my straw, so I'm off air for a bit..... what am I on about?....well at times I do feel like an exhibit in a zoo in here............  Don't just run a forum, learn from it.

Hi happispirit and Parkin82,

In terms of adult diagnosis, you would need to visit your GP to get referred to a diagnostician. I would recommend reading our pages about adult diagnosis. You can find out about diagnostic services in your area by using our directory. We also have advice if you have concerns about visting your GP. If you still have concerns/questions it may be helpful to contact our helpline which you can also email for more information.

Hope that this helps you both but if not please don't hesitate to contact us.

Sofie Mod