AMAA: Reframing Autism
This month we are doing something special for neurodivergent folks out there! It’s time to have a chat about the unique mental health challenges that are faced by the autistic community.
We will be joined by Ginny from Reframing Autism -- an organisation that has such a powerful mission statement, I thought I would include it below.
“At Reframing Autism, we want the Autistic community to be included, embraced and valued.
We want Autistic people to be active citizens.
It is our mission to help our community achieve these goals.
At Reframing Autism, we nurture Autistic identity and culture.
And we celebrate diversity in all its forms.”
Reframing Autism provides autistic led:
- support + education
- research + resources
- leadership + advocacy.
If you want to check it all out I highly recommend jumping onto their website, checking out their podcasts and reading their articles.
On Tuesday the 20th of April we will have the privilege of having a two hour live chat with Ginny. As always, send through all your burning questions and we will go through them together between 7pm - 9pm.
@Lost_Space_Explorer5 It can be so hard to deal with the uncertainty about what will happen to your sibling if something happens to you or your parents. We have no plan for my sister either. We were initially told that her recovery would take a year and a half but that would have been last year, and she is still bedbound. I think she will have to go to a home for people with disabilities if something happens to my parents, but my parents want me to look after her which means I will have to give up work. I feel like giving up work to care for someone would be expected if you are the parent of a child, but not for a sibling.
As I now work 40 hours a week, my sister is being cared for by our mum most of the time but I still do a lot of things for her when I get home from work and on the weekends, mostly school-based things and managing her appointments. Each day is unpredictable and there is often some sort of issue happening when I get home. I think we could really do with some support from an agency or from the government (she was rejected by the NDIS on the grounds that she is 'improving' and it might not be permanent). Caring for her is a really big commitment. At one point, we were told we have to get her into her wheelchair and up and down in our home lift at least ten times a day. Who has time to do that? I agree that there are both good and bad things about being a carer but I wish I wasn't a carer. I think that most young carers feel the same way.
@Autistic_Pegacorn, I love this comment! Tim Chan is a wonderful Autistic advocate. I have learned so much from him. For anyone who is interested, check out his Tedx talk (the first by a non-speaking Autistic):
https://youtu.be/Woy-XzC-UVs
Can't wait to check out that video @GinnyRA love a good TED talk.
@Lost_Space_Explorer5 totally appreciate you wanting to make sure that you're being sensitive to others feelings, so thank you for that. It sounds like this conversation brings up lots of feelings for yourself, so I hope you can do something nice for yourself tonight after it.
@Hozzles I can relate to what you're saying here, it's not exactly the same but I'm in the process of receiving a late diagnosis for ADHD and it absolutely get that it feels like a missing piece 
Thank you for sharing that info @Autistic_Pegacorn i'll be sure to check out Tim Chan 🙂
I think you've said it best @Lost_Space_Explorer5 if society reframed the conversation/attitude/treatment towards autism than less shame would exist. And that's like most things -- I think many of us go through a phase of wanting to be "normal" just to find it doesn't actually exist.
@Lost_Space_Explorer5, I think there may be a question that relates more to your personal situation a bit later on. Hopefully some of the ideas I have for you to think about are helpful.
Thanks for being open about your feelings on this @Lost_Space_Explorer5 it sounds like this evenings chat could be a good opportunity to see different perspectives on autism
Thank you to the user who asked this question and we hope you can get some good insights from @GinnyRA response:
What advice would you give an autistic young person struggling with their mental health? (Especially if they've had many unhelpful and unpleasant experiences with mental health 'help' before- ok you got me, it's me)
My advice to an Autistic young person struggling with their mental health would be this: don’t give up. Keep taking steps forward – even small ones count. You are brave, capable and resilient. Be kind to yourself; allow yourself to make mistakes. Engage in your passions. Stim freely. Surround yourself with sensory comforts. Hug a dog or a cat. Connect with your neurokin, the Autistic community. Find professionals who "get" you. Prioritise your wellbeing always. Reach out for help whenever you need it.
Beautiful, spot on advice @GinnyRA
On the note of stimming freely -- @Tiny_leaf made an awesome stimming thread here if anyone wants to check it out sometime 🙂
@Hozzles, you're right: the medical model of Autism as a disorder rather than a neurological difference is alive and well. It's up to us to change that.
@GinnyRA wow, that's incredibly inspiring. I'm dealing with a lot of the same things too (depression, OCD, anxiety + have been seeking an 'official' autism diagnosis for years). I'm much younger than you but sometimes I feel like I will be too unwell to ever recover enough to make my voice heard or do anything I love. It's nice to hear these things from older people, haha.
SO inspiring that you found an autism diagnosis well into adulthood! I find that so amazing (and funny, when I was first 'diagnosed'/ suspected as autistic by a professional when I was about 11 my mum rejected it because it was 'something that only affects toddlers'.... okay). One of my friend's parents was recently diagnosed in his late-fifties, I believe!
@Hozzles, so glad you found my story helpful. I think I'll talk a bit more tonight about seeking a late assessment/diagnosis, so perhaps you'll find that useful too. It is truly life changing to discover this part of your identity, at any age!
It is so nice to see people further along in their journey @Hozzles it can provide so much hope for when things seem overwhelming. I hope you leave this chat tonight feeling as though you can make your voice heard -- because you have a strong voice and it deserves to be heard!
Let's get into the next question and a super important one at that, keen to hear what your thoughts are @GinnyRA
Why do you think autistic people are statistically more likely to experience depression, anxiety, eating disorders, suicidality? Are there things society or individuals can do to change this?
The statistics on mental health and suicide amongst Autistics are truly heartbreaking. Autistic children are more than 30 times more likely than their non-autistic peers to contemplate suicide. Around 50 per cent of Autistic youth experience clinically significant anxiety and depression. More than two-thirds of Autistic adults in Australia have a mental illness. And in Australia, mortality rates for Autistic individuals are more than two times that of the general population, with suicide a leading cause of premature death in the Autistic population (more than nine times the rate of the general population).
Although Autistic people are more likely to experience depression, anxiety and other mental health conditions at higher rates than the general population, it is important to note that mental illness is not an intrinsic or necessary part of Autism. We know that some of the key factors contributing to poor Autistic mental health are the lifelong exposure to discrimination, stigmatisation, exclusion and misunderstanding of Autistic people, and there is a heavy toll to masking one’s Autistic traits – that is, camouflaging one’s authentic Autistic self – in order to cope in a world that is predominantly not Autistic.
What can society do to help? First of all, start listening to Autistic people. Find out more about us, our ways of being, the barriers we face. Accommodate our needs, which are not “special” but simply human needs. Accept us exactly as we are. Embrace our Autistic identity. Amplify our voices. This is what genuine acceptance looks like.
I completely agree @GinnyRA and this is so, so well put. You are quite the wordsmith and I think I'll be quoting you all night. This got me right in the feels:
"Accommodate our needs, which are not “special” but simply human needs."
@GinnyRA Those statistics are really sad. 😞
Many of the young people I support at work are Autistic and have mental health issues. I agree that issues such as bullying and a lack of understanding of Autism in the education system can contribute to mental health issues.
@WheresMySquishy, absolutely. Sadly our education system contributes greatly to Autistic mental health issues. There's a long way to go when it comes to understanding, acceptance and inclusion.
I love what you have said about accommodating our needs and seeing us as Autistic human beings. A truly inclusive world. This discussion is Ausome!
Welcome to tonight's chat @Autistic_Pegacorn great to have you here and glad you're enjoying it.
