To “I wish I didn’t have Asperger’s”

Published on Monday 30th April 2012 by DJ Kirkby

A couple of weeks ago, someone somewhere googled the phrase “I Wish I Didn’t Have Aspergers”.  The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad.  She wished she could have answered.

We don’t know who it was.  We don’t know where he/she lives.  We have no idea if he/she found what he/she was looking for in that search. But, there are many of us in this world who feel that having autism is not something to be wished away so we decided to  have a flash blog day today in an attempt to get our message to that individual and everyone else who needs to hear it!

We hope that these messages of hope and positivity about autism will help the person who entered the search phrase to feel better about who they are – a person with unique  potential – which actually makes you the same as everyone else on this Earth.

I was diagnosed in my 40s which was a huge relief to me.  Now I could understand why I had always struggled to be like so many other people. Now I knew that there were others who I ‘fit’ with.  I go to an adult autism group once in a while when I am not in a too intense amount of sensory overload  from being at work all day.  What is so remarkable is that each one of us who goes to my adult autism group is completely different from the others. However, I have never heard one of them say that they wished they didn’t have autism, and I wish you didn’t feel that way either.  Don’t wish yourself away. Let me explain why…

I am considered a useful member of society by many who know me.  I am a registered midwife and registered midwifery lecturer who teaches midwifery to degree level students. I am a registered Public Health Practitioner (the first midwife to be invited to join the UK Public Health Register).  I am the 2012 Writer in Residence for Portsmouth Libraries. I am a published author of fiction and nonfiction.  Most importantly of all (to me) is that I am a good wife and a good mother with a loving, understanding husband and wonderful children – a son who is also autistic and two stepsons. My life may sound idyllic to you ( well I hope it does anyway) but it took me many years of apparent failure, being told I was stupid, or lazy or weird, of failed friendships and damaging relationships to get where I am now.  I am stubborn and so I persevered with trying to fit in, to hold down a job, to ‘do things right’, though at times I did wonder if it would be easier to just give up.

After many years I realised that if I wanted to do the things I longed to do, such as being a midwife, then I would have to mimic the way others behaved, the way they spoke to each other in public (though not the way they talked about each other behind closed doors in some cases).  So I trained myself to become a chameleon person, to blend in with other people who were different form me (when I was being paid to).  It took a long time to learn how to do it well but eventually it worked!  It is stressful (but I don’t think feeling stressed at work makes me any different from anyone else) and since I ‘Came Out Asperger’s” to everyone I work with I can now do things like wear noise cancelling earphones when the noise of the office gets too much (which helps so much).  My work colleagues understand that I prefer to be on my own, that ‘it is me not them’ so they don’t misinterpret that as me ‘snubbing’ them, and even more importantly, they (usually but not always) don’t take offence when I say something that inadvertently upsets them. If you would like to hear more about working in health and social care as a person with autism then you can hop over to YouTube and watch this video of me talking about it.

The most important tip I can give you is to never stop trying to achieve your dreams.  The process won’t be easy (it isn’t for anyone else either because everyone has their own internal struggles that we can’t see) and never be afraid to tell others that you have a diagnosis of autism.  If they don’t or won’t understand… well that is their problem, don’t allow them make it yours.  Try to be proud of who and what you are – use your diagnosis as an explanation but never as an excuse.  You are different – you see, hear, smell, learn and interpret things in a special way – find a way to use this your advantage!

My one blog post is not enough to tell you everything about why being autistic can be wonderful but I hope each of the posts written for you today helps you to reach that level of understanding. I wish you strength, and every success you work for.

Kind regards, Denyse


27 comments so far

  • You’re very lucky you have Aspergers. My son is severely autistic, has virtually no speech, is completely dependent on others, is a danger to himself since he can easily escape if not watched, harms himself when agitated and can be loud, noisy, used to be violent and destructive, and only recently at the age of 14 learnt to use the toilet. He’s in residential school now, since we couldn’t keep him at home any longer.

    • Hi Mary, thank you for taking the time to visit and to leave a comment. I agree with you that I am very lucky to have Asperger’s rather than the most severe form of autism. Your son is lucky to have you and his residential school to support and protect him. It is wonderful to hear he has made progress and can now use the toilet. It is a step forward despite the fact that it took him until he was 14 to take the step.

      • Thank DJ for your positive comments. Things were very hard but, yes, they are getting better. All the best to you 🙂

  • What a thoughtful, inspiring post – and a lesson for us all – for those with any diagnosis who must find a way to live at peace with it, and for those without who need to be more understanding.

  • It used to give me a lot of grief, a lot of inner emotional turmoil, before I finally got a Dx at age 53, and it took awhile to really understand, but when I did, it was just a huge relief. I’m really comfortable with it now.

    • Hi Clay, it is important to recognise that it can take time to accept and understand a diagnosis of autism in any form and for all those involved. I am glad you are comfortable with yourself now and I hope our messages of positivity will help others to feel the same way.

  • This is a wonderful post. Thank you for dropping by my site and leaving a link to your Autism Positivity post! This is such important work we are taking on as a community and I am so pleased you have participated. I am hoping that you will please consider having us publish your post on the Autism Positivity site : http://autismpositivity.wordpress.com/submit-an-entry/

    We’d love to include your post as a part of the body of support available for those who may be struggling.

    Hugs
    Leah

  • Lovely DJ Kirby! You are a talented amazing and wonderful human being! I think you’ve done plenty to shine a positive and enlightening light on Asperger’s – well you have to me anyway! I hope whoever sent this question reads this post!

    Take care
    x

  • While it’s great to read of positive aspects of Asperger’s diagnosis, it’s also important to be able to say if a person doesn’t feel okay about it: i.e. that if they feel stressed or negative about their difficulties/differences, they should be able to express that negativity, without feeling they are ‘betraying’ the cause.

    • Hi Helen
      Thanks for taking the time to read and leave a comment. I agree with you about a person needing to be able to say they are feeling negative about having a diagnosis of Asperger’s, and I hope my post doesn’t imply otherwise! Please tell me if it does so I can amend it. I wanted this to be a message of positivity as I have a tendency towards negativity myself so this was helpful for me to write as well as being intended to be helpful to the person who is wishing they didn’t have Asperger’s syndrome. I don’t understand what you mean by ‘betraying the cause’ though…the cause of what?

  • Pingback: D.J.Kirkby (@DJKirkby) to To “I wish I didn’t have Asperger’s” #AutismPositivity2012 | Autism Positivity Day Flash Blog

  • I do hope the person who made that comment has seen your post Denyse, it’s so positive and shows how much someone can achieve, no matter what their ‘problem’, with persistance and, in the case of your lovely family – love.

    • Thank you Gina. As you know I am often struggling with high levels of anxiety and fear that I will do or say the wrong thing, but today is all about being positive about autism…so I left all that behind and focussed on what is good about being autistic. Quite a lot for me as it turns out 🙂 now if I could just change personality to someone who is optimist and carefree….

  • Hi my lovely Denyse,

    Just read it and my reply is on FB in my group but wanted to leave a comment too 🙂

    I think that your post here is GREAT 🙂 Thank you for putting it into words. I hope that it motivated others with AS and helps them to understand/be understood.

    It would be bad if we were all the same though now, wouldnt it? 😉

    Take care and write on! x
    Sarah

  • Being an aspie is part of a package — the “mindblindness” often is paired with cognitive aptitude in other areas. (Where are the highest concentrations of aspies? On the math and physics faculty of universities ;-))

    And when I see and hear the supposedly “socially intelligent” talking heads of the IdiotMedia in action, I am reminded of the bitter German rhyme about being a Jew, which I’ll adapt here:

    “Schau Ich mich die Aspies an
    Ist mir wenig Froh daran
    Aber denk Ich mir die Anderen ein
    Bin Ich froh ein Aspie zu sein”

    (When I look upon aspies/Little joy it brings me/But when I think of the others/An aspie I am glad to be)

  • My friend was an Aspie and was undiagnosed, a fact he often bemoaned by saying, “I’d rather be Autistic than a freak.”
    In the end, he never found the acceptance he sought. Members of Aspies for Freedom drove him to online suicide a couple of months after he joined.

  • I just came across this wonderful blog and wanted to thank you from the bottom of my heart for the affirmation I needed to keep pushing on. I too am a midwife with Aspergers and while I do wonderfully with my clients I have struggled immensely with fitting in with and communicating with co workers and managers because I am so different. It is so good to know I am not alone in this struggle. Much love xx

    • Hello AM,
      Nice to meet you! There are loads of us with AS in the health professions, with more and more of us feeling able to ‘come out Aspergers’ as the years go on.

      • Hello, I have loved reading this post. I am a student Midwife and I really struggle with fitting in, with my family, friends, and co workers. My husband can find me frustrating because I have a tendency to correct him and it annoys him that I am right about most things.
        I too put on a mask and am very good at acting social by mimicking others, but it does take a lot of effort and makes me feel anxious most of the time. I notice things that others don’t.. like clocks ticking etc, and I don’t like to be anywhere too busy.
        Unless I actively listen, I actually find listening hard to do because I get distracted easily, sometimes by others, noises, or sometimes just my own thoughts trail off. I have always been different from everyone else, and some people do think I’m a little bit weird, openly saying this to me because they like my weirdness, that I am a nice person. At university, I find it hard participating in group activities, and also presenting in front of the cohort. Only recently I had a panic attack.
        I wonder if I struggle with social anxiety or indeed whether I have AS. The problem is that I am scared to seek a diagnosis because I don’t want this used as a reason to prevent me from completing my Midwifery course. I am scared that they will think AS is not compatible with being a Midwife.

      • Hello there, and thanks for your comment. I am glad you have enjoyed reading this post. The issues you struggle with could certainly be autism, but they could also be symptoms of many other things. The only way to know for sure is to go for formal assessment and diagnosis. I understand your concerns over getting a diagnosis but I can sure you that from my perspective and experience, they are unfounded. I am very ‘out’ about being a person with autism and this fact is not an issue with my employers as a midwife and as a lecturer in midwifery, nor is it an issue for my students or the women and families I care for. Keeping in mind that everyone is different I would like to generalise and say that autism is well suited to working within the healthcare environment. That’s not to say that I don’t struggle, I do, every day but I have learned coping strategies that work well for me and mean I can blend it. I am completely shredded by the time I get home each day and the stress of functioning in a neurotypical work environment is undoubtedly shortening my life span but that is my choice – it’s important to remember that not everyone with autism can cope with working, and we all have our own path to walk in this life. I gave a talk on working in health and social care as a person with autism which you can watch on YouTube if you wish, and I hope that you find it of further help and that it helps to allay some of your concerns:https://youtu.be/KCxvvIyeOOQ

  • Thank you so much for the link to the video and your advice. It has been very insightful. I’ll go see the doctor and see what he thinks. I can relate to many things you have spoken about, but not all. I will seek advice. I really admire you for being so open and honest. Thanks again.

  • i have long thought that I a lucky to have Aspergers. Just a little more autism and I would have been lost in G-d knows where in my head. Finally getting a diagnosis has allowed me to accept my myself for who I am. An earlier diagnosis sure would have made life easier. I Am at piece with it and see the world in a better light. Now, I try to help other aspies find inner acceptance…lou

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