Why Getting an Autism Diagnosis Doesn’t Come with Support (And What to Do About It)

I thought getting diagnosed would be the hard part. I was wrong.

Myth: Once you’re diagnosed, you’ll immediately get help.
The Reality: You’re on your own.

When I found out I was mostly on my own, fighting an up hill battle, against the system. Against society.
I didn’t know I was going to be on my own, with occassional help from parents and organisations, until I got diagnosed. I was diagnosed, and on my own. There was no roadmap, no help and I had no idea where to look for help.

Why the Support Gap Exists

Most healthcare systems are built for children, not for adults. Most images I saw online, were depicting images of children with their parents. I rarely saw images of adults on these websites. They were there, but not to the extent the children were depicted. This is because of the wrong assumption that once you reach adulthood, you no longer need help. The harsh truth? Even adults need help. Adults may need therapy when their mental health suffers.

Even if we do get help, as adults, mental health services are underfunded. Or even understaffed.
So if you’re looking for a specialist, there are long waiting lists. Immense long waiting lists. Ranging from 6 months to up to 2 years if not more. Even if you get the help, it’s not certain your insurance may cover it and accessing these organisations, may not even be easy. I had to travel close to 2 hours for a psychologist. Even my parents told me to look for a psychologist closer to home.
Yet, not every mental health practitioner is educated or is trained well enough to help individuals on the Autism Spectrum.

What “Support” Actually Looks Like (If You Can Get It)

Most therapy and psychologists don’t really focus on Autism specifically. There doesn’t seem to exist a specific psychologist, just focused on Autism. There are plenty of psychologists who specialise in other mental health problems and disorders, alongside Autism. Alongside, ADHD. However, once you find out that your appointment is set, you realise there are waiting lists. Waiting lists for psychologists, therapists, psychiatrists, etc.

You can, also, look into support groups in your area, if they exist.
Support groups are helpful in the sense that they can offer a sense of: “we’re not alone’. Which is amazing for the individuals wanting that feeling of belonging.

However, the gap between diagnosis and actually getting help is enormous.
You can ask for help, but it would take you months, maybe even years to get the help you need.

I have been on waiting lists, for 2 years more or less. Because, only recently have I started looking into getting help. Because I didn’t have the guide or even understood the guide that was right in front of me: my own diagnosis report.
However, since I recently figured out the help I need, I have been looking into getting that help.

The Emotional Impact

After getting my diagnosis, I didn’t immediately felt abandoned by the system. It wasn’t until I realised the loneliness of “at least you know now”. That was worse. It was even worse, when I realised that some family members and friends, didn’t understand why I still struggled.

I have dealt with that form of isolation and it’s not the best. I can tell you that.
I have experienced that isolation on various levels. From a parent not accepting the possibility that I could be on the Autism spectrum to, a person that told me: “but you don’t look autistic”. I have experienced the isolation. But, I also know not everyone means to upset me or even wants to harm me emotionally by making these comments.

Advocating for Change

However, this doesn’t mean our system is perfect. Our mental healthcare system needs to be better.
By sharing my story, my journey, I hope others on the Spectrum feel less alone. Because a blog like this, can push for change. You can even advocate for change by taking small steps, at home. But not just at home. You can also advocate for change at family gatherings when the subject arises.

Conclusion

The system may be broken, but you’re certainly not broken. Finding your community, your people, may fill the gaps. Finding people who are in the same boat as you, can fill the gaps. You’re already doing the work for change and advocacy by seeking answers right now.

And with that I’ll end this post here with a question to you, dear readers: What has your experience been?