9 comments

  1. This is the first of your posts that I’ve read and I didn’t know anything about Anne until now. However what strikes me is that the more I read about Autism the more I wonder if my 19 year old son is Autistic. He identifies as having anxiety but is resistant to the idea of Autism. But he is struggling so much right now! And he cannot figure out how to manage his anxiety. He’s at a crucial stage, trying to figure out how to become a functioning adult, and each time he has a failure in becoming an adult it’s like a blow to his self esteem. I just think a diagnosis would help him find his way. But I’m not sure how to talk to him about it, because if he starts to feel like I’m pushing my own ideas on him he will dig in and become more resistant. Thank you for this and I will be reading more of your posts.

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    • It is difficult when you know something might be helpful to someone but they don’t want to hear it. Ultimately, people make their own decisions, we can’t make others do what we would like them to do. I would likely raise the idea of it, not saying ‘I think you are autistic…’ but just raising the specifics where traits you observe match autism and that having a diagnosis could lead to greater support. I would then leave some information lying around that he could read if he was interested. Beyond this, it is entirely his decision and his right to decide his path.
      From a point of view of managing anxiety and other challenges, you don’t need a diagnosis to help with these. Most of my life I didn’t have a diagnosis, and as I mention throughout my autobiography ‘Look Into My Eyes’ I taught myself skills. As an 8 year old I started meditating which helped me to learn to manage my attention, it helped me to be able to focus on one thing and shut everything else out, so I started learning to manage sensory overload and anxiety. Then as a teenager I started learning hypnosis which taught me non-verbal behaviour, so I was able to start recognising when people were happy, sad, anxious, angry, when they liked me or disliked me, when people were interested in what I had to say, or not interested in what I had to say. I still don’t get this all right, but I do significantly better than I ever did. Then in my early twenties I started learning counselling skills and communication skills in relation to dealing with challenging behaviour of children and teens and in relation to teaching parenting courses. This counselling training taught me about using ‘I messages’, it taught me about social communication, how to listen, how to appear interested in what others say, how to ask questions to get people to talk about themselves, etc.
      So, before having any diagnosis I had learned so much which helped me manage anxiety and anger and in social situations. For most of that time I think a diagnosis would have been helpful, with things like getting support around education and around work, but it wasn’t until a few years ago where I felt I had to go for an assessment. Prior to that I muddled through and found my own solutions.
      So with or without a diagnosis your son can learn to reduce anxiety and manage anxiety and other challenges. He can learn things like meditation, communication skills, relaxation, mental rehearsal, etc. He doesn’t need a diagnosis to do these things, he just needs to want to do these things. If he decides not to put in the effort to learn these things or whatever it is that would work for him, that is his decision. What is helpful is supporting him in identifying skills he needs and how to develop those skills.
      My way of working with people which largely avoids resistance is to come alongside them and always start from a place of agreement and work forward together, rather than be the one who creates the resistance by putting up a barrier or challenge etc… I call it a collaborative communication approach. I try to start each disagreement/challenge etc, with ‘yes, and…’ or some other form of agreeing, and then figure out how to move forward from there. I always accept that someone’s reality is 100% real to them and so I want to respect this and work with this rather than try to convince someone that my reality and perspective is the right one.

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  2. Excellent! You couldn’t of wrote that better…
    My son is under assessment for Autism, myself being Autistic trained I’ve noticed for a long time. I like how you explain not everyone is the same and how they can teach themselves to cope when they aren’t really.

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    • Thank you. One of my biggest personal frustrations has been appearing one way and so when you then tell people that actually you are struggling inside they don’t believe you, or that you do. I have a friend who tells me I’m lying about finding situations make me anxious, or that I see things a certain way, because he says, he saw no sign of this, I came across as confident, or calm, etc. He doesn’t accept that I will have been focusing on my breathing and focusing on holding my focus etc, to appear how I need to in that situation, and that afterwards this took so much out of me that I need to take time for myself etc.

      Whereas my wife will see all of this, not just the image.

      I like what Elvis Presley said, “being a man is easy, living up to your image is hard”.

      This is so true, holding yourself as an image because you know you need to behave a certain way etc, is very difficult. For non-autistic people there are things which they do automatically that the autistic person has to learn to do and then consciously apply as it doesn’t happen automatically for them.

      People also don’t necessarily realise that you can be confident in one area of your life because you are just talking about something you are interested in and not outside of your comfort zone. I can appear confident when I’m talking about my experiences of being autistic or about hypnosis etc, but as soon as we get to a lunch break and I have to ‘socialise’ I hide in a corner and don’t talk to anyone, or isolate myself because although I came across as confident when talking I was also overwhelmed by lights, movement, etc, and need to shut stimulation out for a bit to ‘decompress’ or centre myself before I talk again etc… So people are seeing the controlled version of me in these settings where I’m trying to be engaged and focused in the right places etc…

      All the best
      Dan

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  3. You’ve described myself in this article. I am only starting to understand myself in my forties now but unable to communicate as a child and always having a sense I was abnormal throughout life has been damaging and I am in the process of trying to get a doctor to refer me to get a diagnosis. Like you I didn’t think a diagnosis would be helpful but knowing more about myself and the people around me knowing the daily struggle I go through may benefit me in the long run. I loved the tree climbing too and hated having to interact amongst other children. I often offend and don’t understand why or how it happened. I have social anxiety and more sensitive to noise and light. Everything needs to be in order and planned and trying to get me to stop something I’ve started is nearly impossible. I would like to be able to get some sort of help though I don’t see why I have to try and fit in for acceptance especially since I have tried so hard all my life without any success. More help with coping and dealing with daily life. I also feel I can’t tell people I am autistic even though I know for sure I am. My partner knew before I did (she works with people with autism). I feel I will be judged as I have not got a diagnosis and I’ve heard that can take years if ever. I want people to understand me but not think I am jumping on a bandwagon of people self diagnosing. Sorry if this is a bit of a rant and not what you are asking for. I liked your article.

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    • Hi Claire,
      Thank you for sharing. I would love to live in a world where people treated people as individuals regardless without people needing to have a diagnosis of anything. I always told people about myself but never said I was autistic because I didn’t want to self-diagnose. I thought I was probably autistic so it was only when I was really struggling, depressed and suicidal and experiencing discrimination and feeling trapped in my job and in the discrimination that I felt a diagnosis would help me to address these things. As it turned out I was made redundant before the diagnosis went through.
      I have felt that by having an official diagnosis I have been able to be clearer with people about me being me. Before, I would explain about myself but some people would dismiss it as me trying to cover up ‘bad’ behaviour like when I accidentally offend people. With the diagnosis, when I say ‘I’m autistic’ people show more interest, they often want to know more and they are more accepting of me being me. I couldn’t tell people I was autistic (even though I was sure I was) until I had an official diagnosis.
      I struggle with the idea of having to fit in, but the alternative for me would be to live in the woods and almost never interact with people. Again, having a diagnosis has actually led to me not putting so much pressure on myself to conform to an image of how I should be. People generally are more accepting when I sit in a corner not interacting, whereas before diagnosis people would expect I have to mix and join in, but to join in would be exhausting, so this is a good thing.
      For me it took almost a year to get the diagnosis, for adults it typically takes 6-12 months from the GP making a referral to having the assessment. In my case I was told at the assessment I was autistic and that it would take a month or two for them to write the report up confirming this. The main thing (I’ll do a blog post about it soon) is how you seek the diagnosis. If you just go to a GP and ask to be referred they don’t necessarily refer you, they can challenge you and tell you they don’t believe you are autistic, if they do refer you they may not write what they need on the referral letter so you end up with the assessment team rejecting the letter because it doesn’t include any information to convince them you might be autistic. So, you want to be aware of these things and know what to do.

      All the best
      Dan

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      • Thanks Dan,
        I guess you didn’t go through your GP but actually went privately? I saw my GP yesterday and he said he’ll refer me but it means going through a few channels before diagnosis (I.e. Mental health team, psychologist etc). He said this is the way it’s done and it can be complex. I guess it’s good so they can do things thoroughly? But also daunting as I would hate to be accidentally misdiagnosed (I have not had the best experience with the NHS and have been misdiagnosed before). Sorry for late reply. Claire

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      • Hi Claire,
        No, I went through the GP. You don’t go through other channels. The GP makes a referral to the autism assessment (that assesses adults), they contact you directly and send you some forms to fill in (multiple choice and long form answers) then you have an assessment which lasts a couple of hours and ideally includes bringing along a parent (they will find a way to work around this if you don’t have a parent for them to talk to) and then at the assessment they will tell you whether you are autistic, and a few weeks later you get that in writing when they have written up their assessment (I’ve done a recent blog post on this which goes into more detail).
        I have spent the best part of two decades supporting autistic people and their families as well as seeking diagnosis myself, so I know that the process doesn’t involve needing a mental health assessment or any other assessments, you ask to be referred for an autism assessment and the referral is made to the team who do the autism assessments (which could be a mental health team, or it could be a different team of psychologists). It takes about 6-12 months usually (for me it was closer to 12 months) from the GP making the referral and getting your assessment.
        All the best
        Dan

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  4. Excellent blog. I was diagnosed with autism late in life, in 2003 when I was 38. In addition I’ve got severe depression, anxiety and high risk type 2 diabetes. Most of the things said in the blog I can related to.

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