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Topic: Empowering people with autism

16 posts, 0 answered
  1. PamelaR
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    2740 posts
    20 September 2018

    Hi everyone

    One of the other Community Champions thought it would be good if I shared some information I had on the Autism Spectrum. I’ve dug a little deeper than my original piece of information as I think it’s an important topic these days.

    I'd love to see add what you know about empowering people with autism. Please feel free to post your experiences.

    Throughout my life I’ve worked, socialised and been friends with people on the Autism Spectrum. I know how life can be difficult for them and those who support them.

    Here is some of what I’ve learnt over my life:

    Presume intellect: Because a person is non-verbal or struggles in communication does not mean they are not intelligent nor have nothing to say. We must explore and utilise the strengths and passions of the person.

    Behavior is communication: We may be making a grave mistake when we simply seek to shut down or suppress with powerful psychiatric drugs what we judge to be ‘unwanted’ behaviors. Behaviors, even those one may deem ‘unwanted’ may be for some the only means to convey their needs or distress.

    Self-Advocacy: If we wish to understand autism, we must be willing to enter their world, not force them to enter our own. We must be willing to validate self-advocates and seek knowledge about the autistic mode of being from those who actually live it each day.

    Relationship: To help autistic persons forge emotional connections, navigate through the mainstream, and learn new skills, the key is relationship. We must be willing to forge a bond with the person, to truly seek to understand their experience, their world, how they find meaning, to know them as a fellow human being. Once we forge relationship, we can create a common healing ground

    Respect: It is necessary for respect to exist and this means as well that we do nothing to force, coerce, or manipulate the person. We regard them as a person worthy of dignity. Our role is to advocate and support, not seek to alter the person into something they are not nor need be.

    While I've learnt all the above, these words were taken from the 2013 article Autistic Empowerment in Psychology Today by Dan L Emunds.

    Kind regards

    PamelaR

    3 people found this helpful
  2. White Rose
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    White Rose avatar
    6325 posts
    20 September 2018 in reply to PamelaR

    Ruth, that is fantastic. Many thanks.

    Mary

    2 people found this helpful
  3. PamelaR
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    20 September 2018 in reply to White Rose

    Thank you Mary. I hope it will generate some discussion on the forum. Here's hoping!

    PamelaR

    2 people found this helpful
  4. Quercus
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    23 September 2018 in reply to PamelaR

    Hi Pamela,

    Thank you for starting this discussion. I agree with Mary this topic is incredibly helpful.

    I like how you mention respect. To try see people as themselves. To try understand how we see the world as individuals rather than try encourage people to see the world as we do.

    It would be excellent if any members who identify as being on the Autism Spectrum could join in. I for one feel sorely lacking in knowledge in this area.

    My friend's son was only given a diagnosis at 8 years old. To me he has a few quirks which are unique to him but so do I. We all have our differences/quirks/unique styles and behaviours.

    So I find it really hard to understand why he has this label and moreso how I can help make him feel accepted just as he is.

    Thank you Pamela. I really appreciate you sharing your knowledge.

    Love Nat

    1 person found this helpful
  5. Chickenhead
    Chickenhead avatar
    30 posts
    12 October 2018 in reply to PamelaR

    Hi Pamela,

    My husband has an adult diagnosis of high-functioning Autism. He was told at the time (and I whole heartedly agree) that he was diagnosed with the highest form only because he had managed into his 30s before being diagnosed, if they had figured it out earlier, then he would have been classified further along the spectrum.

    You make a few really important points I would like to second. Sometimes I get motherly and really want to fix things for him, but he doesn't necessarily agree with my assessment. I am left with the choice of respecting or manipulating. It is SOOO incrediably important I never manipulate. That break in trust is something he has experienced his whole life and I have had to work so hard at establishing trust, it is not worth the relationship breakdown for me to take that initiative. To him, it is borderline unforgivable, even if my motivation is good.

    When it comes to communication, this is a continual battle for us. He speaks too much (a defence mechanism I believe developed from people not taking the time to understand him), and I don't speak enough (he never feels like he understands what I'm thinking or feeling). I've had to learn that if he keeps revisiting a topic, it's because I haven't adequately conveyed something. It may be that further discussion is warranted so I do understand him, it may be that I do understand but haven't expressed this in a way that he is convinced, it may be that he doesn't understand why I'm doing or saying something. Whatever the scenario, patience is key on both sides to continue until it is resolved. Frustration that he is going round in circles, or "lecturing", is not helpful. I need to be asking more questions, or relaying back what he's saying in my own words to express my understanding, or I just need to be talking about me more so he comes to understand my perspective.

    The other thing I'd add is that he is very intelligent and comes across "normal", so people very much underestimate the implication of that diagnosis in his practical life. It frustrates me so much when people think he can just do something different, change it, get over it, etc. it just isn't that simple for him, and he needs lots of understanding and patience. Problem solving is only really effective when he trusts that I'm not dismissing, judging or manipulating.

    Thank you for raising this topic, it's very close to my heart.

    Chickenhead

    2 people found this helpful
  6. PamelaR
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    12 October 2018 in reply to Chickenhead

    Hi Chickenhead

    Thank you for your post and welcome to the forum community. I see you are new - 8 posts.

    You're so right about manipulation. I think that it also applies to relationships with others too, not just with those on the spectrum.

    I've just read your intro - congratulations on your upcoming birth. One good thing is you are aware of PND - that's awesome. So you can prepare yourself. Most likely it doesn't mean it won't happen, but you'll know what to do when the time comes.

    Reaching out here to others is a great place to start. You'll find others with their stories who can care and support for you too. Lovely to have you here Chickenhead.

    Once again, thank you for adding to this thread.

    I think it's so important to make others aware that people who are on the spectrum live normal lives, live their lives from their own world view and not one that we want to make for them.

    Kind regards

    PamelaR

    2 people found this helpful
  7. Maestro19
    Maestro19 avatar
    1 posts
    18 January 2019 in reply to PamelaR

    I am proudly Autistic.

    I was diagnosed Autism Spectrum Disorder (High Functioning Autism) in Melbourne, March 2018, at the age of 37.

    Because concern for mental health is one key lead-in to diagnosis, there are some key points I would like to share into this forum & topic, in the hopes they may help someone.

    The journey of a person on the spectrum is one towards greater understanding and acceptance, both of self and by others.

    On this journey, people can be cripplingly marginalized or encounter depression and thoughts of suicide. Sometimes a crisis comes later in life, triggered when circumstances exceed a person's coping capacity.

    Autism has gone undetected in too many of the older generations, females, and those with mild traits.

    People:

    • always knew they were different
    • often were bullied as kids
    • in the case of females, "high functioning" or mature persons, may have been mis-diagnosed by a qualified professional due to masking and differences in presentation
    • frequently experience anxiety
    • may encounter burn-out which needs ASD-aware treatment
    • may be characterized as lazy reflecting difficulties with energy levels and executive function
    • may struggle in love and work
    • develop techniques of passing as Neurotypical (Masking), such that they themselves may at first struggle to identify their stims and masking behaviors without thoughtful reflection

    Diagnosis is empowering and liberating.

    Some resources I have found to be useful are:
    http://wrongplanet.net
    http://reddit.com/r/aspergers

    For a valuable deep-dive, I recommend:
    https://youtu.be/qpitsA-0pBQ

    If you know someone who thinks they are on the spectrum, here are some suggestions about what to do next.

    1. Fill out an online screening test (one of the tests linked from permanent sticky at the reddit community is: https://www.aspietests.org/userdetails.php?target=/raads/questions.php)
    2. Find a Psychologist local to you who specializes in treating your presentation of Autism (adult, female etc) and who may be counted upon not to be fooled by masking etc.
    3. Prepare a page of symptoms and experiences which reflect on traits and experiences of Autism
    4. Armed with the information from steps 1, 2 and 3, request a mental health care plan (10-session subsidy) and a referral from your G.P.

    If you or your supporters think you can't afford it, consider the opportunity cost of not having access to this basic insight, and the strategies others have developed.


    2 people found this helpful
  8. PamelaR
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    2740 posts
    20 January 2019 in reply to Maestro19

    Hi Maestro and very warm welcome to Beyond Blue forums

    Thank you very much for sharing your story. It is good to see people can proudly stand up and say - I'm autistic. That's not always been an easy thing to do.

    Sharing information about the things to look out for if you think you maybe and also the link to the online screen test are a great resource for people out there.

    In part this thread started because some of our posters have declared themselves as autistic. Not everyone is familiar with ASD so it was thought it would be good to start a thread that might be of assistance to those reading and those responding to posters.

    I encourage people who have been diagnosed with ASD to share their stories here about how you are empowered.

    Kind regards

    PamelaR

  9. heathw
    heathw avatar
    1 posts
    3 February 2021 in reply to PamelaR

    Hi Pamela etal.

    Like Maestro19 I am also proudly autistic. Diagnosis wise I have Level 1 & 2 support needs. Personally I'm in a very long term relationship and work in the arts in a management position (both strategic, tactical and customer facing) with a strong leaning towards data analysis as I get older.

    Why do I mention that? Well because that has been identified by myself and my employers as a better fit to my strengths and a reduction of the things I find grating. Don't get me wrong I'm great at customer service and can mask with the best of them, but it definitely is a stress load that I could do without.

    I completely agree with Maestro's statement on the mental health burden that autistic folks carry. The contemporary experience is geared towards saturating stimulation and often invasive personal interactions. Non Autistic people are by and large lovely but unaware of excess boundaries that increase the overload. We on the other hand, at least by the time we become adults, are very aware of other people's rules (and frustrated when they keep breaking their own rules .

    Ways that I've managed work accommodations is negotiate dimmer lights in my office. I work with the finance team as it's quieter there and the financial assistant has a young autistic son so we can chat. I also wear sunnies in the boardroom and we try to keep to one person talking at once. There are other accoms as well but we are working on that as we go.

    The biggest help are my autistic pals around the world with whom communication is so easy. It's just like a feeling of coming home talking to them. We are very different - more so demographically than my neurotypical friends - but the communication and understanding is just instant.

    As for supports. If you are autistic or a friend, family, supporter of an autie have a listen to people with lived experience. It's not always relevant (and can be salty for understandable reasons sometimes) but it's worth a listen.

    Last thing I'll say is to mention invisible labour wrt teaching people to understand our needs or accommodating for others not accommodating for us. Kudos to our beautiful carers who took this burden on along with us as children. I'm on a few DEI working groups and it's important to pave that way.

  10. Matchy69
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    5617 posts
    3 February 2021

    Hi all I just noticed this thread.I have Autism and so do my 2 children.I found it difficult when I was in school being teased a lot and find it still find it difficult being in my 50s as I have great difficulty making friends or people liking me.I worry about my kids and want them to have a happier life then I do.

    Tale care,

    Mark.

    1 person found this helpful
  11. Summer Rose
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    3 February 2021 in reply to Matchy69

    Hello all

    This is a fascinating topic and I’m learning a lot. Thank you to all contributors.

    Kind thoughts to all

  12. Summer Rose
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    4 February 2021 in reply to Summer Rose

    Hello again

    Does anyone have any advice on how to raise the possibility of autism being present with an adult?

    Someone I love is struggling with mild to moderate anxiety and traditional psychological treatment so far has been ineffective (over a period of 18 months). At the same time, my son displays some behaviour/traits associated with autism.

    I gently raised the subject of autism and the idea that an assessment could be helpful. My thinking was that maybe the treatment for anxiety isn’t working because it needs to be tailored to an autistic brain. This suggestion was angrily rejected.

    My son feels that if autism was really an issue then his psychologist would have raised it by now and I should but out. He does have a point, but I have always known my son is a little different; this was always put down to his being a gifted child.

    It’s obviously a really sensitive issue. I guess I’m looking for advice on whether people feel I should continue raising this with my son. And, if so, how best to do this.

    Kind thoughts to all

  13. Matchy69
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    4 February 2021 in reply to Summer Rose
    Hi Summer Rose I was diagnosed later in life with Autism.I grew up feeling I was different to everyone and being picked on.I got diagnosed with other health problems and mental health problems as a child.It was only as an adult when I ended up in a mental hospital that I got diagnosed with Autism.It was really a scarey thing to hear at first and made me a bit angry that I wasn't diagnosed as a child.My life might have been completely different.I think you done a really brave thing in suggesting a possiblity of Autism.I can understand the anger he might have towards this.Just keep at it in a caring way and see if he would like to rule the possiblity out.
    Take care,
    Mark.
  14. Summer Rose
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    4 February 2021 in reply to Matchy69

    Hi Matchy69

    Thanks so much for your reply. I really like the way you phrased it to "rule the possibility out" and I will try that approach with my son. That makes a lot of sense to me because that's actually how I feel.

    There's never been any really obvious signs of autism (e.g. makes eye contact) and nothing that has limited his ability to function. In fact, just the opposite. He's been highly successful at school, has good friends, he's very funny and has a busy social life. BUT, as his mother, I know that he's always been a little bit different. Sensitive to noise and taste, needs routine and decompression time after socialising and he's always had various special interests throughout his life that he loves to talk about.

    Gifted? Autistic? Anxious? I think he needs a professional to help him sort it out. Trouble is, I don't think he really wants to know. Like you said, I'll raise in the issue in a caring way.

    I'm really sorry that you had a difficult childhood and have experienced serious mental illness. I am sending you nothing but best wishes for better health.

    Kind thoughts to you

  15. PamelaR
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    24 June 2021 in reply to Summer Rose

    Hi all

    I started this thread quite awhile ago. I'm pleased to see there are some who are posting very good information here.

    One of the things I find interesting is ASD (Autism Spectrum Disorder) is so broad. There are many who live their lives without ever knowing they are on the spectrum. While there are some who require ongoing care for their whole lives.

    I think that my hubby is on the higher end of the spectrum and it has become more obvious as he has aged. He has always had difficulty making eye contact, but through gentle hinting over the years he has learnt to look at people. Sometime I need to give a gentle foot nudge under the table and he gets the message to make eye contact. He has a lot of interest in cars on the road (every time we go out), - type, make and loves to talk about them. Routine is a big thing - gets very upset with change to the routine. He has lived a very successful life - we get on well and trust one another implicitly.

    Feel free to add your story if you want too, no pressure.

    Kind regards

    PamelaR

  16. Huckle
    Huckle avatar
    11 posts
    14 August 2021

    Hi All, I've suspected that my 23 yo daughter is high functioning ASD for some time & so have many friends & family members. This has also been suggested by her GP & her former psychologist. She believes she is high functioning ASD also but has accepted her psychiatrist's diagnosis of treatment resistant depression with BPD tendencies as trying to get help has been impossible so she accepts whatever she can get. She developed verbal skills later than normal, has always been quiet and shy, is socially awkward (her own words) & struggles to make friends and maintain relationships. She has never been able to identify her own emotions but feels empathy for others. She arranged objects as a child (never "played") & she becomes fixated on interests i.e. maths. She is extremely intelligent. Since her late teens she's stuggled more with life & was diagnosed with depression which has never responded to any treatment. 2 weeks ago she ended up on life support in ICU after an overdose of her meds, she felt she couldn't fight any longer & I'm desperate to get her the right help. I wonder, because she doesn't respond to treatment, if the issue is ASD with regression/burnout & depression is a byproduct of the underlying issue. She's had recent memory problems, exhaustion & difficulty functioning in all areas of life. I guess my question is, could getting an accurate diagnosis (&validation for her lifelong struggles) help? I don't want to go down a path that will make life feel even more hopeless to her.

    Thank you

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