fbpx body {overflow-x: hidden;}

“Despite being given the ‘golden ticket’ to accommodations, Katie’s parents were shocked by the lack of emotional support and guidance post-diagnosis. They didn’t receive even as much as a pamphlet.”

There are many reasons why someone would seek a formal autism diagnosis for themselves or their loved one.

Sometimes they are looking to gain a better understanding of themselves or their loved one, and perhaps find out why they experience particular challenges and what they can do to overcome them.

Other times, they need help getting access to appropriate support, services, or benefits to assist them in day-to-day life.

Katie Forbes’ parents was interested in all of the above and requested a formal diagnosis when Katie was 11-years-old (in 2006). A short time later, Katie received her autism diagnosis.

Despite being given the ‘golden ticket’ to accommodations, Katie’s parents were shocked by the lack of emotional support and guidance post-diagnosis. They didn’t receive even as much as a pamphlet.

autistic people feel unsupported

Share your experiences in the comments section at the bottom of the page.

17 years on, Katie touched on the experience on We Work With Autism’s Instagram page: “I am baffled by the utter lack of support autistic people receive following diagnosis.”

“I’m incredibly grateful to have been lucky enough to receive a formal diagnosis, but I’m equally perplexed that there’s no post-diagnosis services specifically designed to help us navigate our new reality.”

In the caption, Katie asked: “Have you had a similar experience? Or have you received support?”

The post was inundated with comments with other autistic people sharing their experiences.

READ NEXT: Should I Disclose My Autism?

Katie’s experience resonated with Kelly Donovan: “Couldn’t agree more! My son received his diagnosis in November 2021, the support we have received since has been non-existent”

Many turned to social media, Chloé Hamel said: “I received more support from communities on Instagram. Where I live, the wait to have [access] to a psychologist is one year long. And it’s costly…

“Happily enough I have friends who are autistics too who helped me along the way.”

Abby Gentsch said: “Thiiiiis. For some reason, I sort of expected that I would be swept up into a world of professional resources and medical support. Instead, Instagram has saved me!”

Carrie and Jessie were lucky enough to get support: “I had two 1:1 post diagnosis sessions with an assistant psychologist (the other option is five group sessions). And the funding has just come through for sessions with a psychologist in the autism services, and they will also be doing a sensory profile assessment.

“So I feel very blessed that I was diagnosed in fantastic services, and they were fantastic in the assessment process too, spot on! I’m sorry for the people who don’t have a positive experience of support.” 

Did you receive any post-diagnosis support? Tell us in the comments section at the bottom of the page.

READ NEXT:

Autistic people feel unsupported – even after receiving a formal diagnosis

"Despite being given the ‘golden ticket’ to accommodations, Katie’s parents were shocked by the lack of emotional support and guidance post-diagnosis. They didn’t receive even as much as a pamphlet."There are many reasons why someone would seek a...

Should I disclose my autism?

"Whether or not you disclose your autism – to friends, family, employers or otherwise – is completely your decision." Deciding whether or not to disclose your autism isn't always an easy decision to make. Katie provides some considerations to help...

Why autistic employees enhance workplaces

"Autism is not an illness or condition – and the word ‘disorder’ is seriously flawed. It is a neurological difference. Something I consider a strength." Katie rectifies the wilfully wrong assumption that autism disadvantages autistic workers and...

Ask Autistic Advocates: Rebecca Duffus

Ask Autistic Advocates is an interview series that celebrates autism and how it enhances our lives. Each week, a new interviewee gives readers a glimpse into what makes them, them, and how autism has helped shaped their lives. Today's interview is...

Why we need to stop saying, “we’re all a little autistic”

"The seemingly harmless sentence, "we're all a little autistic", strips us of our indenity, the good and bad experiences that made us who we are today." Although it's mostly said with the best intentions, almost as if they offered, “don’t worry,...

Ask Autistic Advocates: Amy Richards

Ask Autistic Advocates is an interview series that celebrates autism and how it enhances our lives. Each week, a new interviewee gives readers a glimpse into what makes them, them, and how autism has helped shaped their lives. Today we're getting...

Ask Autistic Advocates: Sarah Duggan

Ask Autistic Advocates is an interview series that celebrates autism and how it enhances our lives. Each week, a new interviewee gives readers a glimpse into what makes them, them, and how autism has helped shaped their lives. Today we're getting...

Ask Autistic Advocates: Katie Forbes

Each week, a new interviewee gives readers a glimpse into what makes them, them, and how autism has helped shaped their lives. Today we’re getting to know We Work With Autism’s founder, Katie Forbes.

Ask Autistic Advocates: Molly Smeele

Ask Autistic Advocates is an interview series that celebrates autism and how it enhances our lives. Each week, a new interviewee gives readers a glimpse into what makes them, them, and how autism has helped shaped their lives. Today we're getting...

8 Actually Autistic Advocates You Should Follow on Instagram

In the world portrayed by the media, only able-bodied, neurotypical men and women are capable of success and happiness. On TV and film, autistic people—or should I say, men and boys—are relegated to supporting roles and are often textbook examples,...
Privacy Policy