Share your stories and experiences

[autism-unlimited]

You have a view, why not express it?

Your story could make a big difference.

We want to give autistic people a platform to share their experiences in day-to-day situations, be it on public transport, in healthcare settings, in supermarkets, or other everyday scenarios. Whether it’s a positive or negative experience, we want to know how you were feeling and what would’ve helped you, or did help you, in that moment. Take Debbie’s story for example My hospital experience, where she shares a difficult experience during a hospital visit. She just wanted to feel safe and understood, but was instead left with feelings of dread and anxiety. By collating experiences, we hope to consult professionals in these settings and come up with top tips for how everyday situations can be improved – for everyone.

You can be completely anonymous or share your name; write bullet points, a short written piece, record a video, or tell us over a phone call – you can choose whatever is most comfortable for you. If would like to share your story, please email Emily at [email protected]

*Your stories will be shared to our website and social media platforms. If you are under 18, please provide parental/guardian consent upon submission.

 

[Orange Glasses]

I went to your website, autism-unlimited.org, and was unable to activate various sections such as ‘Who We Are’. I tried navigating to learn more but it was locked on the main page and it was a bit jumbled. Words not complete etc.

I am currently on an iPad and don’t know if your web designer optimized it for mobile platforms. Maybe another member can try the webpage and see if it will works for them.

 

[autism-unlimited]

I went to your website, autism-unlimited.org, and was unable to activate various sections such as ‘Who We Are’. I tried navigating to learn more but it was locked on the main page and it was a bit jumbled. Words not complete etc.

I am currently on an iPad and don’t know if your web designer optimized it for mobile platforms. Maybe another member can try the webpage and see if it will works for them.

Hi, sorry to hear you're having trouble with our website. Our website is optimised for mobile platforms and we have taken a look and found no issues at the moment. When you click 'Who We Are', the navigation should open up and you can click on various sections. You can find our 'About Us' page here About us. But if you're still having trouble, please let us know and we will take another look.

 

[Crossbreed]

@autism-unlimited, which view does your organization espouse?

1. All autism is defective (and should be cured or prevented, if possible),
2. all autism is neuro-diversity (and no cure or prevention should be sought),
3. basic autism [ASD1] is neuro-diversity while severe co-morbid conditions are defects, or
4. something else...?

 

[Darkkin]

What's interesting is just like with all other social programs everything goes until autistics are 'grown-up'. (18 - 25 years of age, essentially when the brain and body are both done growing.).

Take a look at the demographics of the autistics on this forum a very large swath of us are between 28 - 70. An age demographic that has almost zero resources when it comes to living with autism as an adult.

People don't outgrow autism, according to society we become quirky, eccentric, strange, odd, creepy, and/or weird. New Agers call us indigo children or starseeds. Nope, just a neurodivergence known as autism.

Up to 80% of autistics are unemployed or under employed, as adults (US). And a large percentage of female autistics are not diagnosed until their late teens and twenties, often when issues become apparent at work, university, or with their own offspring, (given there is a strong genetic component to autism).

The context of the demographics being solicited for anecdotal stories really doesn't align all that well with the demographic of the courted clientele. (A pretty decent number of our forum members have forged through life's struggles on their own with no early intervention or glasshouse treatment.)

Another aspect that affects a lot of autistics are physical in nature. Up to 20% of autistics report hypermobility in their joints and very elastic skin, apraxia, digestive issues, poor interoception, etc...

Each issue is referred to different facets of the medical profession, as are the sundry of mental health comorbidities (ADHD 40 - 60%, depression 66%, anxiety 75%, etc...). Many of these issues are also not comprehensively identified until adulthood, when most autistics have aged out of the social programs.

Cherry picking ancedotes to paint a desired mosaic that emphasises what can be without the real world context of said ancedotes can be misleading in the extreme. Polling those who benefit from your organisation's work for their experiences and stories is going to give others a far more accurate representation of the work you do.

Until the adult demographic of autistics have equal representation it isn't accurate to portray their stories as part of a marketing campaign.

Autism is a distinct neurotype and instead of autistics being looked at as a comprehensive whole, we get dissected and scattered, less than the sum of our parts.

Just as the blind men describe the elephant.