After diagnosis

By Autistic Phoenix

FAQ: After Diagnosis

Q: What just happened?

A: You got diagnosed 🙂

OK so this first question is a bit of a humorous one, but it reflects how a person can feel after waiting for diagnosis and then suddenly being on the other side of the end of that process and no longer waiting for anything.

Everyone reacts to this differently, but to a greater or lesser extent seeing the diagnosis written down objectively in your diagnostic report and reflected in your medical record, is a significant life event.

Whilst the journey to diagnosis is a fairly straight road with a single destination (or T-junction perhaps, with a turn right for positive diagnosis and a turn left for something else) there is no official map for where to go next. It’s a bit like finishing a running event; the training is in the past, the event itself is now over, and you’re handed your medal and banana and bottle of water and then you wander home to get on with your life.

There need be no more obsessing over ASD research and anxiety over false negatives. But you may have anxiety about whether you got a false positive. And you’ll be wondering what to do with what was probably an official endorsement of what you knew already.

Q: What help is available?

A: At least the following:

You should be offered a follow-up appointment of one sort or another to talk through the implications of your diagnosis and provide an opportunity to as questions about your report. How this is arranged in practice varies from place to place (reminder – I’m talking about the situation in the UK).

You’ll also have access to a Care Needs Assessment if you need it, the ability to use Access to Work to help with employment issues, and you can stop worrying about any agencies you’ve come across that have been (perhaps mistakenly) insisting that they can’t do anything for you without a formal diagnosis.

There are many online communities that provide a great place to talk things through with other autistic people who are in the same position as you, or perhaps some months or years behind you or ahead of you in the journey around diagnosis. Some popular ones include the forums at https://community.autism.org.uk and https://wrongplanet.net/.

Q: What happens next?

A: That’s very much up to you, but…..

Perhaps because I’m asking myself this same question at the moment, I don’t have a very good answer. What I can say is that we need to be wary of simply going back to the life that we had before diagnosis, if that life was causing us distress.

So the journey of self discovery continues, as it does for everyone, but our diagnosis at least gives us the keys to some doors and, more importantly perhaps, is a concrete and objective reminder of the fact that we are justified in being kind to ourselves when we find that doing the “things that people do” overstretches us.

Perhaps one of the next battles is in gaining (more) acceptance, explaining again to some people who don’t yet get it (and who perhaps equate the end of our diagnostic journey with the end, or beginning of the end, of a temporary illness), and finding ways to remind ourselves of our new understanding of the healthiest ways to approach life.

On that subject of “reminding ourselves of our new understanding”, you might find some inspiration in my post here: My Autistic Charter.