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I joined this group to find out more about Autism.

PhillPhill Posts: 1Member Listener
edited July 2017 in Autism and Aspergers
Hi.

My name is Phil and I joined this group to find out more about Autism.

My son is currently being diagnosed and although not officially confirmed, its likely that Aspergers Syndrome may be the verdict. I basically need educating on how to start learning to embrace the whole subject. I find it hard to handle and struggle to understand the condition that he has. I'm hoping that this is the place to be for help for him and me.

Replies

  • GeoarkGeoark Posts: 1,239Community champion Disability Gamechanger
    Hello @Phill and welcome to the community.

    It might help others if you can let us know the age of your son. Ideally early diagnosis means as parents we can learn more and get help to avoid some of the pitfalls. Later diagnosis can mean that issues have been building up making life more difficult.

    We have some great members with Aspergers like @DannyMoore who are more than happy to share their experiences and advice.

    As for starting learn about Aspergers I would suggest looking at http://www.autismbedfordshire.net/about-autism/triad-of-impairments/ and https://www.autismspeaks.org/what-autism/asperger-syndrome

    If you have specific questions about your son's behaviour then I am sure you will get some good advice.

    For me one of the biggest issues was how to tell my daughter she had Aspergers. This was because most of my research showed the negative aspects of Aspergers and not the positive sides, plus she was 12. In the end she was told it meant that she had different challenges in life to most other children. As she was strong in English and Maths the example I used was based around this. The fact she found it easy while others struggled with them, she struggled with making friends while they found it easy. But the important thing is they are both challenges and ones which can be overcome. She still doesn't have many friends, but the ones she do have tend to be fiercely loyal to her.

    I would like to finish on a positive note, when she was diagnosed I was unsure about her ambition to go to University, but she got a first. Despite all the issues around social interaction she has spent three years working in a busy London store and enjoys her job. This was her second year going to Germany for a convention and has already booked for next year.

    Aspergers did not change my daughter, it changed me and for the better, when I changed so did my daughter's life and the outcomes. It is not easy, and she is still a pain in the butt at times, but there is nothing I would change about her.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • Sam_ScopeSam_Scope Posts: 7,732Member Disability Gamechanger
    Hi @Phill
    Welcome to the community! 
    Scope
    Senior online community officer
  • LiamO_DellLiamO_Dell Posts: 1,114Member Pioneering
    edited July 2017
    Hi @Phill,

    How are you getting on?

    As well as the links @Geoark mentions, we also have lots of useful information about Autism Spectrum Disorders on our website, and there's a dedicated ASD category in our community too, which might be of interest to you.

    @VioletFenn, do you have any ideas or resources to share?
    Liam
  • VioletFennVioletFenn Posts: 124Member Pioneering
    edited July 2017
    Hi @Phill and welcome!  Local ASD support groups will definitely be helpful as they can give you info as well as suggest ways of helping your son directly. 

    I would like to put my own caveat on @Geoark 's link to AutismSpeaks  - they're an extremely controversial organisation and I for one do not agree with them or their work at all. They are all about 'cures' and I (along with many, many other autistic people) don't believe their methods are remotely sound. A good explanation as to why I feel this way can be found here. But you are obviously absolutely entitled to make your own mind up about that one.

    Personally I'd recommend the National Autistic Society for really well-founded information - click here for their page explaining autism.

    Both myself and my youngest son are diagnosed and it hasn't stopped us doing anything so far - I work as a freelance journalist and my son is doing well at school. He's in a specialised school environment, but that's the thing - even needing the extra help doesn't make him less able, we just sometimes have to find workarounds to help him get where he wants to go.

    Those of us with autism are just differently abled and sometimes it *is* difficult to get used to that. But we're more than capable of leading full and happy lives and I'm sure your son will be just the same, especially with such a supportive dad around. 

    Do stick with us and feel free to ask questions! 

    Violet
    ASD advisor, Scope
  • [Deleted User][Deleted User] Posts: 689 Listener
    edited August 2017
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  • [Deleted User][Deleted User] Posts: 689 Listener
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  • VioletFennVioletFenn Posts: 124Member Pioneering
    Oh mine too, @DannyMoore - the wretched thing appears to have a mind of its own!
  • GeoarkGeoark Posts: 1,239Community champion Disability Gamechanger
    @VioletFenn thank you for the caveat regarding one of my links.

    I have been asked on a very small number of occasions if there was a cure for Aspergers would I give it to my daughter, my answer has always been no.

    Aspergers is not something overlayed on my daughter's personality. It is a fundamental part of who is she is. Many of the qualities I both admire and love about my daughter are as much to do with the way she thinks and reacts because she has Aspergers. I have seen her stand up to bullies, I have seen her interact with a child with 80%  burns and could not understand why the child was in the children's ward. I watched her when inside a year she sourced a venue, funding and bands to raise money for a charity. I saw her stand on the stage to introduce the first band and froze. I also remember halfway through the night when I joined her on the stage to tell people about the charity she was supporting. The banter between us to much laughter and the shock when her age,15, and the fact she had Aspergers was revealed.

    There is something else I remember about other parents, parents who were desperate for a cure, and would follow anything that fed into their desires. Parents who would go for whatever was on offer, and would make excuses why they did not work for their child. Desperately wanting the child they thought they should have rather than enjoying the individual and the privilege they had in helping them grow up into adults.

    I also remember the process I went through when I learned she had Aspergers and the journey from being a parent to being her father, and how it was me who changed and not her. I am sure I have continued to make mistakes, but then I am also human. So I am in full agreement with you where 'cures'  are concerned.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • VioletFennVioletFenn Posts: 124Member Pioneering
    Thanks for understanding where I was coming from, @Geoark - I love the way you describe things.

  • NystagmiteNystagmite Posts: 609Member Pioneering
    edited August 2017
    Hi @Phill,

    I agree with @VioletFenn, especially about the looking for cures. I feel insulated by the people looking for cures, autism makes me who I am and other people and I admire certain parts of my personality, it's as if they want to rid the world of people with autism.

    Being around others with an ASD can help, it's nice when we know someone who has the same uncommon struggles that we have, it helps us know we're not alone.

    We have no idea what a cure will do to us either. How do we know, for example, it's not going to turn those of us who talk, into people who have no speech at all? We'll probably all react differently to this cure too.
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