Empowering people with autism

[PamelaR]

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

[White_Rose]

Ruth, that is fantastic. Many thanks.

Mary

[PamelaR]

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

PamelaR

[Quercus]

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

[Chickenhead]

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

[PamelaR]

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

[Maestro19]

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.

[PamelaR]

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

[heathw]

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.

[Matchy69]

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.