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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.
Me waiting for this chat.. I am so excited !! Huge fan of Reframing Autism and can't wait for this one!!
Today is the day!! @Hozzles @xXLexi_Lou122Xx @WheresMySquishy @Tiny_leaf I honestly can't wait to get into this.
Here we have a bio for our guest Ginny:
Ginny is a proud late-diagnosed Autistic woman. She is Reframing Autism's Communications Manager, responsible for coordinating the social media and public face of the organisation. She is passionate about Autistic and mental health advocacy and has written several wide-reaching articles on her experiences of anxiety, depression, OCD and atypical anorexia. She thrives on a steady supply of coffee, ice-cream and dog rescue videos.
Can't wait to see you all here tonight to dive into this important conversation.
I might be popping in and out, in the middle of uni stuff and thinking about having a bath (it's freezing here!! )
No problems @Hozzles a bath sounds amazing! Nothing better than a warm bath on a cold day.
We'll be going live in just under ten minutes with @GinnyRA -- just tagging everyone who has shown interest @xXLexi_Lou122Xx @WheresMySquishy @Tiny_leaf
Before we get started I just want to say a huge thank you to everyone who submitted a question. We received more questions than any other AMAA we've done before! That really shows me how important this conversation is and I want you all to know that we've done our best to get as many questions into the two hours we have together.
Now let's get to it!
@GinnyRA thank you so much for making time to spend a couple of hours this evening. Before we get into the questions I wanted to link everyone to Reframing Autism's incredible resources page. So much great content there to explore!
@Bre-RO wrote:We received more questions than any other AMAA we've done before!
WOW! I love that so much!
Hi @GinnyRA! Welcome!
I really, really love that Reframing Autism is run by autistic people + nurtures autistic culture. It's so important to make sure no one is speaking over voices less often heard. I feel like a lot of companies etc deceptively try to make it seem they 'care' about autism but they employ no autistic people + use harmful and noninclusive methods.
You're absolutely right: neurodiversity has become such a buzzword, everyone wants in on it, but few organisations truly centre Autistic/neurodivergent people. I'm fortunate to work for one that does.
@Hozzles I agree! It also really bugs me when services put systems and rules into place to 'protect' people with mental health issues without actually consulting people with mental health issues.
Well, I’m Autistic and I have co-occurring mental illness. I was first diagnosed with clinical depression and anxiety in my teens and developed atypical anorexia (officially an Eating Disorder – Not Otherwise Specified) in my late thirties, which was driven by OCD. I’m now in recovery from the eating disorder, but anxiety remains a daily battle and OCD is very much still in the picture, too.
In my early thirties, after experiencing a traumatic birth and postnatal anxiety and depression, I became involved in mental health advocacy. I published numerous articles about my experiences for a large online group of parents, and coordinated several live events promoting awareness of parental mental health. I was, and remain, very passionate about breaking down the stigma associated with parental trauma and mental illness.
Following my Autism diagnosis at 39, I began working in the Autistic advocacy space. There is a strong prevalence of co-occurring mental illness in the Autistic population, and I am deeply committed to improving the mental health of the Autistic community by changing the narrative around Autism, dispelling harmful myths, nurturing Autistic identity, promoting Autistic wellbeing, and empowering Autistic people, all of which we seek to do at Reframing Autism.
One area in particular that interests me is the intersection of Autism and anorexia. I believe I became very ill, very quickly because my Autistic traits – my intense focus, my attention to detail, my unwavering determination, and my very high personal standards – played right into the eating disorder. But it was the same traits – strengths that come from being Autistic – that have guided my recovery. It is my hope that in years to come that Autistic people suffering from eating disorders will be better understood and thereby treated more effectively.
Currently, my main focus in my role at Reframing Autism is coordinating an all-Autistic international online conference exploring Autistic mental health and wellbeing, together with UK organisation Aucademy. The conference, which will be held on 1-2 May, features some of the world’s best known Autistic advocates, alongside some newer advocates, sharing their expertise on the topics of mental health, wellbeing, masking, burnout, hyper empathy and more. We’d love you to join us if you can! The details are here:
https://events.humanitix.com/autistic-mental-health-and-wellbeing-an-all-autistic-online-conference
Thank you so much for sharing @GinnyRA, it's clear that you've had quite the journey. I love what you've said here:
"But it was the same traits – strengths that come from being Autistic – that have guided my recovery."
I have no doubt that with people such as yourself working in the spaces you are, change is inevitable.
Also completely agree with what has been said around the tokenistic approach to being inclusive. Actions speak louder than words and that's why organisations such as Reframing Autism are so important
@Lost_Space_Explorer5 I relate to that! This might be irrelevant but I feel like as I'm coming more to terms with my identity as autistic the more I feel disconnected by my psychology studies. I find most psych studies focus on one specific 'type' of autism (i.e. young males) and ignore other voices. Sometimes I feel like it's borderline eugenic, so I'm not sure I want to work in that environment... we'll see, though! This is why it's important for neurodivergent voices to be heard!
This topic is really hard for me to talk about because of my experiences growing up with my brother and having my parents constantly telling me people who have autism but are I guess better functioning are just hoping on the 'neurodivergent train'. I don't want to feel like this topic is hard and I want to know more but I have to admit it's a really hard one for me. I've asked my psych if there's a possibility I might be autistic but we kind of agreed it was possible but we didn't think it would be helpful for me personally to look into it. But I know getting diagnosed can be really helpful for others as there's that understanding of the why and it can get you the right kind of support.
But yeah sorry if I am a bit sensitive on this topic I'm trying to understand but I've got some mixed feelings about it 😞
Aww thanks for being so open @Lost_Space_Explorer5 . Sorry if I came across too strongly in my reply! Just something I've been passionate about lately.
I definitely get where you're coming from. Even still I think that I'm just trying to be unique or jumping on the neurodivergent train to be interesting lol. But it's also the case of finally having an answer for why I am the way that I am... a lot of companies use the symbol of autism as a 'missing puzzle piece', but I think it completed my puzzle. I've seen a bunch of memes stating that young people bully people for displaying autistic traits without even knowing what autism is/ that that person may be autistic. For example all my life I've been told I'm weird, that my interests in certain things are too strong, that I should be marked-down for not making eye contact during a presentation... none of these people knew I could be autistic, so I thought there was just something deeply wrong with me. It's taken so many years to accept this, I remember another psychologist suggesting it when I was 15 and being like 'there's no way'. Your feelings are totally valid though!
@GinnyRA love the phase 'neurokin'!. I've made a lot of neurodivergent friends lately and it's really helpful sharing our experiences.

I look up to your passion 🙂 I get what you mean about jumping on the train, I always second guess myself, e.g. thinking I make my own mental illness up for attention or something? I get what you mean about the missing puzzle piece, I feel like I'm looking for a missing puzzle piece somewhere too, only I don't know what it is


Ahh eye contact can be so hard, my psych keeps encouraging me to make more eye contact so I can 'connect' better with people

@Lost_Space_Explorer5 I think that having those kinds of thoughts and feelings are totally valid and it isn't necessarily a bad thing. I have had similar feelings about my sister. For example, it is embarrassing to have people over due to her non-epileptic seizures, although she cannot help them. I also grieve for the life we would have had if she had not developed functional neurological disorder. She is not doing things that people her age are doing and we can't see her working or going to university. I know there are many options now but from my perspective as a carer, I also wish that she was 'normal'.
