originally posted on 19-04-2021 9:36 AM

 

 

Me waiting for this chat.. I am so excited !! Huge fan of Reframing Autism and can't wait for this one!! 

originally posted on 20-04-2021 11:25 AM

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. 

 

originally posted on 20-04-2021 6:49 PM

I might be popping in and out, in the middle of uni stuff and thinking about having a bath (it's freezing here!! )

originally posted on 20-04-2021 6:54 PM

 

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 

originally posted on 20-04-2021 7:01 PM

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!

originally posted on 20-04-2021 7:08 PM

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@Bre-RO wrote:

We received more questions than any other AMAA we've done before!

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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. 

originally posted on 20-04-2021 7:13 PM

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.

originally posted on 20-04-2021 7:12 PM

@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.

originally posted on 20-04-2021 7:04 PM

Hey hey everyone! I should be doing uni too @Hozzles but I'm really not feeling it 😐

originally posted on 20-04-2021 7:06 PM

Let's get into it! @GinnyRA please tell us: 

 

What's your background with autism and mental health?

originally posted on 20-04-2021 7:07 PM

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

originally posted on 20-04-2021 7:13 PM

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.

 

 

originally posted on 20-04-2021 7:16 PM

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

originally posted on 20-04-2021 7:19 PM

Ooh I've never heard of 'hyper-empathy' before, I've always thought of autism as struggling to relate to others with the theory of mind type of stuff. I will have to look this up!

originally posted on 20-04-2021 7:24 PM

@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!

originally posted on 20-04-2021 7:35 PM

Yeah 😞 It's hard.. @Hozzles there's not enough research. It's not just from my psych studies though, my brother is autistic. Like he's basically non-verbal 😞 So it's like.. really difficulty to give him a voice and I don't know if it would be the same as others who are affected differently by autism.

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 😞

originally posted on 20-04-2021 7:51 PM

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.

originally posted on 20-04-2021 8:05 PM

Oh no it wasn't you at all @Hozzles! Sorry if I sounded upset with you! I just wanted to make a disclaimer to everyone

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 Yeah 😞 Society really forces this view of what normal is and it can lead to shame about ourselves if we don't meet their view 😞 I'm glad you're starting to realise that there is nothing wrong with you and make sense of stuff (even when that can be a bit of a tough process :() I love the phrase neurokin too haha 😛

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

originally posted on 20-04-2021 7:52 PM

Also, just gotta say welcome to the forums @Autistic_Pegacorn!  

originally posted on 20-04-2021 7:54 PM

Thank you Hozzles. I am happy to be here 🙂

originally posted on 20-04-2021 7:41 PM

It's hard for me not to see autism in a medical model kind of way 😞 I just wanted my brother to be 'normal', whatever the heck that means, growing up. Perhaps if society wasn't the way it is and people were more accepting I would not see his autism as a bad thing. And sure there are other ways to communicate with him. My own anxiety and ocd gets in the way of relating to my family anyways. But I feel like yes there was a point where I loved my brother and his 'autism' because that was just who he was but society taught me to be ashamed of that and now I don't know what to think 😞 Perhaps if society reframed this and were more accommodating then yeah there wouldn't be shame around it

originally posted on 20-04-2021 7:49 PM

@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'.

originally posted on 20-04-2021 7:56 PM

Thanks @WheresMySquishy 🙂 Yeah I get the embarrassment 😞 With my brother there's also frustration from my parents and me that comes from lack of understanding of the why. I can't really be around my family as much anyway because of my ocd thoughts so that adds another bloody barrier and it's something I want to work on when I work up the courage to talk to my psych more about it 😞 I get the thing with grieving.. like my brother didn't finish school, my parents have to constantly look after him and I just think that's going to be me when my parents die and I'm scared of what that will look like 😞 I know there are positives and negatives about being a carer but I worry that I will resent by brother and I don't want to 😞 You're a carer for your sister if I'm remembering right @WheresMySquishy? How do you find it?