Am I autistic?

Hi all,

I am a male in my late 30's. As a child I was diagnosed with ADD and medicated on Ritalin. I remember having to see a load of counsellors and I was even banned from eating sugar and E numbers for a whole year. My childhood was awful. I always felt completely misunderstood and could never understand how what I had said created so much drama. I had literally no friends, self-harmed and generally hated myself. My IQ was very high, and my spatial reasoning was graded in some high percentile. But school was out for me. Also, as a result I hardly speak to any of my family. 

As an adult I have been extremely high functioning. I get extremely obsessive.  I remember completing a masters degree and locked myself in a room for three months. I got a distinction but also developed some agoraphobia. My life is filled with similar stories where I have taken things to the extreme and then had to get counselling to bring myself back to homeostasis. However, I have been told I have Asperger's on many occasions, usually preceded by "I can't believe you just said that you must have ...". my usual response is to look confused having completely missed any social cues.

I saw a presentation a while back about autism having been misdiagnosed as ADHD back in the day. I evaluated every online test I could find and scored 44 out of 50. I then asked my wife, best friend and mum to complete the test on my behalf and scored very high again. My wife said, "I always knew you had autism" and my mum said, "this makes so much sense now".

I could have cried when I did the test...textures, yes toilet paper packaging makes me want to throw up. Numbers, yes I multiply numbers in the weirdest way I have ever heard. Struggle socially, literally this is my life. Anxiety in new situations...do panic attacks count. And so on...

I am finding it hard to comprehend and really don't know where to turn or what to do now. It feels quite overwhelming and emotional to know that something that literally destroyed my childhood and relationship with family was completely mis diagnosed. I've learnt so many coping mechanisms as an adult, I've literally read How to wind friends and influence people dozens of times. Just knowing there's a community out there who feel the same is ... I can't even find the words it's so amazing. Any advice would be greatly appreciated? Am I even allowed to say it's autism without a formal diagnosis? I feel like I am wasting the GPs time as an adult, do I pay private? Is there any benefit to mentioning it to work or will it throw up more issues? 

  • I think you might be from what you've written and there's a lot I recognise. 

    I think if you've reached this stage, taken tests, thoroughly tested the hypothesis in your own mind and concluded that there may be something in it then you should visit your GP. You really wouldn't be wasting their time.

    They will in all likelihood ask you a few questions, and perhaps make your fill out screening forms that they will then forward to your local Adult Assessment Team. I know this because I've recently done the same.

    The waiting lists for adult assessments on the NHS are really long. I think the average wait is around 2 years. It can be done a lot quicker if you have the means to go private, but the costs are likely to be considerable. 

    Self-diagnosis is completely acceptable, and you can use your time on the waiting list for a formal assessment to find out more about autism. Which is what I'm doing.

    Good luck with whatever you decide to do. 

  • Laughing

    ^Me laughing.

    Also me clarifying that I wouldn't literally enjoy typing it out each time as I'm on my phone and I'd get a sore thumb. ;) 

  • This sounds brilliant. I'd actually be interested in the results from your cross reference data. For science. ;) 

    Also this is such a beautifully autistic way of doing things, and I'm impressed.

    I suggest that you give yourself a proper user name because you might be here for a bit. ;) 

  • Yes, absolutely you are 'allowed' to just self-identify. We'll more than respect that. Not everyone wants to go through the stress and strain of an assessment or to be labelled.  Most of us aren't clinical psychologists with any right to diagnose anything, but you are sounding pretty autistic to me.  I assume your online test was the AQ50.  Whilst not a diagnosis it is a good preliminary indicator and 44 is pretty darn high.  And as my autism informed counsellor said to me before my assessment, generally people's own intuitions as to whether they are or aren't turn out to be correct. 

    If you do go down that diagnostic route, it sounds to me like you need to ask for a dual assessment (ADHD/ Autism, which are related neurodiversities of course) so they properly rule in or out both and thereby correct any previous misdiagnosis.  With respect to your GP, the reception you get depends on how enlightened about neurodiversity they are at times, but you certainly aren't wasting their time. You have as much right as anyone else to have an NHS assessment, albeit the wait times are long.  If you do go private, check out the qualification sets of the provider.  Do they have expertise in co-occurring neurodiversities, such that they can rule out ADHA if it doesn't apply to you.  Do they assess as a team; psychiatrist (?) or clinical psychologist with speech and language specialist etc.  You should expect a proper, detailed profile report after your assessment. Your assessors will want all those observations from your friends and family too.

    As for work...depends on your work and what their attitude is like.  My employer is brilliant.  I've had so much support through the whole process.  Not everyone has that experience.  Legally, an obligation to make reasonable adjustment for you follows a diagnosis and it's disclosure to them.

    Otherwise, welcome to the community.  Huge relief when you figure it out, eh? 

  • Good morning all, I just thought I would share a quick update. I still feel utterly shocked but almost relieved at the same time. There is a huge part of me that wonders what life would be like had I been diagnosed as a child. As an aside I looked through my medical records on an app yesterday and saw two small entries 1992 - behavioural issues other 1995 - ADHD. My family felt that it was only right to beat the crap out of me until I behaved in school, I just felt like I was living in a dystopian world where I spoke another language. 

    My wife and I sat down and discussed this at length last night. In the past when we have been walking together, she will try to change direction and will guide me in the direction she wants to go. Push is far too strong a word, but she will touch my arm. I cannot describe the feeling I get but it is overwhelming. I absolutely love my wife, but I literally get so distressed and then feel so guilty for overreacting. She could never work it out either and it's something she has really had to work hard at to avoid.

    As I said, I have little relationship with family as a result of my childhood. I am, however, aware that my dad was sent away to boarding school due to his behavioural issues and my half-brother was also diagnosed with having some sort of behavioural issue. Is autism genetic? 

    I don't know if it's helpful, but I have made the biggest list of all the stuff that I do. I get the feeling that when I go for formal assessment, I'll just send them the list and they will understand. 

    I cannot thank you all enough for taking the time to respond to me. Although this is a great relief, I am reluctant to announce anything until formal diagnosis and this has meant I am limited in who I can speak to.  

  • I was going to go into more depth about how I evaluated the online tests before disseminating the one I selected to my nearest and dearest. Then how, after they had completed it on my behalf, I interviewed each of them at length to gather some usable qualitative data to cross-reference against my own answers. I swear this is the truth but when I wrote it, even I thought it looked like I was taking the p***. 

    Thanks Glitter, it's great to feel supported and not alone. 

  • haha. Repetition is autistic trait too. :D You should love typing it again and again everytime. LOL

    Btw People find that kind of joke I've just made the most annoying among my jokes. I'm not sure if it's true for autistic, You are my first subject to be tested. Stuck out tongue

  • Simple answer?  Yes.

    Well, technically, probably. 

    The number of different posts like this in online groups I've been in is huge. People who think they might be autistic, have done some kind of deep research dive into what being autistic is like and felt it resonate, and then dropped a huge infodump on all the reasons they think it applies to them.

    This kind of obsession is an autistic trait. 

    I'm not a medical professional or any kind of qualified assessor. 

    But yes. You probably are.

    (And I'm going to copy and keep this for the next time this question appears.)

  • Happy to have been of some use. I used Psychiatry UK. I had a written diagnosis, which I asked to be sent to my GP for my general medical record. I was also diagnosed with generalised anxiety disorder at the same time.

  • Thank you so much Kate, it feels comforting to know that I am not alone. I have contacted my GP this afternoon but I think the waiting list is huge. Just to understand that I am not as weird as I thought I was is an incredible relief! Thank you for your support and I hope your assessment goes well. 

  • Thank you Martin. I feel similar regrading testing and it's probably more of a when and not if. May I ask who you used for you testing and if you have any feedback? 

    I think I will raise it with my employer. Even simple changes to my diary seem to cause me an excessive level of distress. The train strikes are playing havoc with my schedule and it's amazing the impact this seems to have on my general levels of anxiety. 

  • I would go to your GP and ask for an assessment - but you may have to wait a long time as the waiting list can be as much as 2 years. If you are financially able to it might worth paying privately for an assessment to speed things up. It strikes me (from your description) that you’re likely to be diagnosed as autistic. 
    My youngest was diagnosed when he was 10 and my eldest was recently diagnosed in his mid twenties. I’m part way through the diagnostic process now and have the full assessment this month. Like you I’ve looked back and realised just how much being autistic has impacted on my life. I wonder how different things might have been if I’d had a greater understanding of being autistic much earlier. However we can’t change the past. What we can do is get as much information and understanding as we can now - and use it to live a better, happier life now and in the future. Having a diagnosis doesn’t change things a huge amount in many ways though - there’s very little support for autistic adults.  But it at least enables us to gain a greater understanding of why we are the way we are, and maybe find strategies to help ourselves. Good luck - and I’m sorry you went through all of that as a child. 

  • ADHD and autism can co-occur, it is not that uncommon. The penny dropped with me very early last year, when I was 59, I then did every test available and researched autism obsessively. Having become convinced that I was autistic, I wanted certainty and validation, so I paid for a private assessment, which confirmed my view with a diagnosis. I could not have rested with just self-identification, even the three weeks I had to wait for my assessment seemed far too long. This is purely personal, other people find self-identification completely satisfactory.

    I have a visceral revulsion on touching nylon fabric, I'm a quivering wreck for minutes afterwards.

    I would say that a lifetime of suffering and not knowing why is reason enough for seeking any degree of  medical help.

    I took early retirement a few months before my diagnosis, I worked at a university, had I continued to work I would have informed my employer and sought agreed accommodations to make my work life easier.