ASD assessment says ASD traits, not enough for a diagnosis

Hi, I d9nt think you would be diagnosed with ASD unless you had it, after all these are Professionals with a reputation to keep. In my case, I wrote all my quirks and experiences and I even suggested I suffered from some sort of anxiety disorder I never even suggested ASD until the Psychiatrist said right at the end of our session, hecwas 95% certain I had Aspergers. When I went for my Assessment, the initial consultation was to determine whether I was "suitable" for an assessment, even though I was referred by the Psychiatrist. There was a communication problem in that my referral was send to one particular branch of Hampshire & Surrey Psychologists and when I hadn't heard anything, I made a general enquiry and was seen by another branch??. Of course you can be cynical and say if course they will do an assessment, because they might need the work, but I had to wait a couple of months, because they were busy.  My Psychologists only worked privately 2 days a week. I did feel a bit of a fraud throughout the whole process but as I said I never mentioned ASD but only when I mentioned by son was diagnosed and I always assumed that I was suffering from some form of general anxiety disorder.

It is possible to have some ASD symptoms without having ASD. The only way you will know is if you take a hard long look at your life and compare with others around you to see if you are different? 

I started my write up with the first issue I could remember as a child when I hated wearing socks and shoes, even in winter and got reported and told off my a Policeman (my parents had to take me to the police station) I was probably 5-6 years old?

Later stories for example I was in Cafe Nero and some woman brought in her own salad and the dressing on it was making me want to throw up! My wife couldn't work out why I keeping my coffee cup near my nose all the time. Of course she couldn't  smell anything. These are the sort of anecdotes I wrote up that got passed to my GP and Psychiatrist etc.

The question you need to ask yourself,  is do you want a diagnosis? I dont need any special treatment although I do wear medical wristband and carry my Austism card. Personally, I hate using the word Autistic because people associate that with a "difficult screaming child" (watch the film the Accountant and you will see what I mean).

So I still think the best thing is to write everything down and be open minded when you next see a GP, Psychiatrist or Psychologist. Tell them you have problems with day to day life but can't understand why and then present your case. If they think you dont have ASD, then you probably dont.

BTW how do you score on the AQ and EQ tests? 

Thanks very much for the information and sharing your experiences. 
No one else has a diagnosis in my family, I think it would be easy to find traits but no diagnosis. Maybe this means I do only have traits. I don’t want them to diagnose me if I am not autistic. I have just been getting ASD employment support and it is really helpful but may now stop because I don’t have a formal diagnosis. This is the main thing that is frustrating.

Thanks for the advice r.e. NHS.

Thanks for your message. I seem to be fine with eye contact, although I do remember being told at school I was being rude for not looking at people when I was speaking.

Thank you. It was nhs. Perhaps I misinterpreted what they said but they would not refer me. Thanks for telling me of your experience, it is really helpful :)

Thanks for your message. It is really kind. I have actually also had and speech and language assessment. It was really helpful. They said I do not have a speech and language disorder but that my scores of the different sections where massively different (varying from 9th-95th percentile) so it helped to understand there are some things in speech I struggle with but there was no diagnosis for this as when the scores were averaged, they came out as ‘normal’.

Thanks for the information and telling me of your experiences. Unfortunately at the moment I am unemployed. Good idea about the nhs wait list :)

Thank you. The assessment I had was with a psychiatrist. He said I have definite traits in the social but less so in the repetitive/restrictive behaviours so not enough overall for a full diagnosis.

Thanks so much for the description. It is really helpful. I don’t know anyone else that has autism so it is helpful having it described.

Thanks so much for the information and links. They are really helpful. Good idea about the reading and learning more

Sorry I did not reply sooner - I thought my email would alert me if someone responds but apparently it doesn’t. 

thanks again

Well I am a diagnosed Aspie and there were many traits. I have the common ones, problem with eye contact, sensitive hearing, always noticing things other people don't,  useless remembering dates and phone numbers, fussy eater, have a couple of obsessive hobbies, only like one music genre...Like you I can easily get obsessed with certains things a work. Being an Engineer if things dint agree with simulations, I cant rest until I have solved it. I wish I was more organised,, but I will plan out a day (particularly when a work) and rehearse what I will do, this includes future social interactions eg going to a shop, GP, hairdresser etc. This makes it less stressful but if things go "off script" I get easily confused and my brain just slows up. Certain situations make me stressed eg certain noise or smell at a restaurant or just a busy Supermarket, having to dodge lots of people. I am fussy about food and eat the same things all the time. I don't like change and like to stick to places I know, eg pubs, restaurants, holiday locations and of course work. I have been with the same Company for 32 years, so people with Autism can certainly hold down a job especially anything to do with Accounting, Science, Engineering etc, but I still get in trouble for speaking my mind though. I have a very strong morality and hate anyone who breaks the rules. I can't lie, mainly because I can't make up a story or an excuse, so at least I would never cheat on my wife. Finally I dont really like physical contact, I am definitely not a "hugger" and always make a bolt for the door at family get togethers  when it's time to leave. So in my case there are loads of Aspie traits and because it's hard to discuss these are remember them in front of someone eg a Psychiatrist or Psychologist, I wrote them all down with anecdotes taken from my life, including when I was a child. I passed all these notes (8 pages of A4) to my GP, then a private Psychiatrist and then to a private Psychologist as part of the assessment. Perhaps, you should do the same? In my case the private Psychiatrist saw me for 1:45 and concluded he was 95% certain I had Aspergers ( btw my son was diagnosed and it's very common in families, my mother definitely had it, so if no one in your family has it, it is unlikely you do). Then I had the full private assessment with ADOS test, and they confirmed my previous diagnosis. So my advice would be to write everything down that you think is odd or impacts on your life, that shouldn't and try again for a diagnosis private or NHS. I hope you find your answers:)

Me too with regards to working I've done the same job for nearly 20 years and it never stopped me from getting a referral. I don't feel comfortable looking people in the eyes so I always stare at the bridge of the nose so it looks like I'm looking.

Being told you would not be sent for an assessment because you are working is really poor, was this private or NHS?

I can't comment on your case but I am working and can make eye contact (not without complications though), do banter and other stuff but I was still diagnosed. I'm male and realise that women have a harder time being diagnosed but even so, I find that reason for you not being referred as shocking and shows lack of knowledge on the part of the healthcare professional who you were dealing with.

I can relate to a lot of what you say about interpreting speech, and also when your mind goes 'blank'. I have a lot of 'non-verbal thinking' time which is a bit like daydreaming but which feels necessary, and when people speak to me I find it hard to hear the words, even though I can hear them talking. Although you don't have a formal diagnosis yet, if there are things that can help you that are similar to the things that help those who do, it could be good to try them out for a while and see if they help at all. Have you tried noise-cancelling headphones, tinted glasses or looked into auditory processing disorder / hearing tests by an audiologist specialising in autism? There is some great technology being developed now relating to advances in hearing support, which can help people to discern speech in noise etc. I started consciously realising there was something going on with my senses and hearing several years ago, but it was hard to figure out because my ears themselves are fine. Then when I tried hearing technology that amplifies speech, I couldn't believe how much it helped and how much my speech improved. Also, the people around you who support you are so important. Even if there is just one other person who listens and believes you 100% when you are telling the truth of your experiences, can make all the difference. Wishing you all the best

useful tip on searching

you sound pretty close to autistic to me but I am not an expert. I divide between ASD and ADD has to be by the experts. Stay in the NHS waiting list and see what they say.

I am very anti-social. I went for a diagnosis thinkin it was antisocial disorder which can be fixed but came away with autism !

autism is more hard wired so the diagnosis is quite serious. It cant be fixed and has a list of co-morbids eg anxiety, depression, suicidial thoughts, eczema, OCD thoughts. severe panic attacks.  Autism also has shutdowns ( me ) and  complete meltdowns.

On reflection, getting a diagnosis was/is harmful to me in the world of employment / to getting a new job - most employers dont want the extra  bother.

if u r high functioning autistic, which i think u r, there is probably no support after your diagnosis 

Sit and wait for your NHS diagnosis dont tell them about your private one as that will influence them. Emphasize your obsessive to detail/ small things.

do you have any relatives who autistic ? eg my mum probably is , My uncle was really odd, and my nephew is a classic case of autism ( aircraft obsession 6 hours a day ) My daughter probably is, but she doesnt think a diagnosis achieves anything !

Having a job should have no bearing on your diagnosis. It was one of my reasons for seeking help was my major fights in work where i would lose jobs ( highly antisocial, not understanding things, different learner, and refusing to change direction by managers ), and i came out as ASD.   I crave routinue at work. I create routinues all the time and now fight their creation as they impact my life, ability to be flexible/ multitask.

In my opinion, Your ADD diagnosis is so close to ASD as to make no real difference.   I wonder did the ADD diagnosis cloud further decisions/diagnosis for you ?

Bottom line : me thinks, sit and wait for your NHS diagnosis, unless you have serious anxiety / increasing depression which could make your life hell / end short.

if u r rich/well off/really determined,,,,  get another private diagnosis.by an expert on female autistic diagnosis as there are very subtle but important differences between men and women eg Lorna Wing centres in England.

Lorna Wing Link

I have one more suggestion here.  I was in your same situation getting nowhere with the process of testing for autism spectrum.  I finally decided to speak with a psychiatrist.  I asked him for advice on getting a diagnosis as an adult for autism spectrum.  He told me not to bother because my case was an open book case of Aspergers.

If you look at traits alone when trying to make a diagnosis you will get really confused.  Autism can be easily confused with ADHD and giftedness.  In fact I think many gifted individuals receive a false diagnosis on the spectrum.  Not that you can't be both, but it isn't as common as many people think.  Special interests are common in gifted because of their high intellect.  On the other hand special interests are a way for autistics to regulate stimulation.  It is a way for you to be in control of how much stimulation you receive when life may be difficult for you to manage.  Special interests are an all in or all out type of thing.  When you are ingaged with one, you tune everything else out.  That is how it helps you cope.  That being said special interests might not be practical.  You might have to work, it might be too cold for an outside interest.  Your interest might require money.  Sometimes obsessions with fine detail, lining up objects, or something more like ocd might be more helpful than a special interest.  Special interest therefore do not determine autism.   Routines and schedules are another way of regulating stimulation.  It is like going on Cruze control.  You are following a predictable pattern so that you don't have to process so much of what's going on around you.  If you have trouble with processing things around you wheather it's with your senses or just with information that your brain needs to process, then you have autism.

I am not confirmed Aspie either. One of the things I did was to read heaps and heaps about Asperger's. I did this because both one of my GPs and a good friend from way back (who has been diagnosed with Asperger's as an adult) encouraged me to look into Asperger's as a possible.

I researched the basics like NHS website but the really useful learning was from people with Asperger's. Youtube videos, blogs by people with Asperger's talking about their experiences and worries, forum posts like on this community.

I also (being a health researcher) researched many scientific research papers on Asperger's. I found that useful too although it might not be everyone's choice to do that.

From the forum posts I've been reading here over the last couple of months, it seems like there are quite a few people who are in a similar situation; having multiple traits and yet not being given the diagnosis because they're able to self-support themselves.

It might help to look around the forum here for other threads of people touching on the same thing.

Here is one example:
https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/9561/test-result-asd-traits-but-no-diagnosis

Also putting the following search into a search engine like Google can be helpful can be helpful:

site:community.autism.org.uk/ traits no diagnosis

This has given me over 1,000(!) search results
https://www.google.com/search?q=site%3Acommunity.autism.org.uk%2F+traits+no+diagnosis

[The 'site:community.autism.org.uk/' means the search engine will just show results from this forum]