How to Get an Autism Referral for an Adult

I’ve talked about my suspicions that I might be autistic. Spoken a little of my struggles growing up and in dealing with the adult world. Not long ago I decided to finally get answers for the concerns that have plagued me my entire life. Well, as I said I would; I did. What this means is that I am now on the system and have an appointment to begin being diagnosed for autism. Unsurprisingly, it’s a blessing and a curse. Getting answers is great but inviting more sources of anxieties into my life (even temporarily); is not. Interestingly; the process for getting an autism referral for an adult is far from straightforward.

The Gateway

As an undiagnosed autism investigation is not an accident or an emergency, the entry point to getting a referral in the UK is the GP. This will vary on where you live, time of year and what your situation is; but it took me about 3 weeks to get an appointment. Whether you see that as good or bad depends on your expectations.

My GP was nice enough but very flustered and not very confident in how to deal with the overall situation. She didn’t know how to handle an adult looking for a referral and didn’t seem to have a complete grasp of what the process would be for a child either.

So, what I was told is that there isn’t an official procedure in effect for adults. This is because most cases are picked up at childhood. Instead, what happens is that adults are referred to either a psychologist or one of the local mental health teams (despite autism not being a mental health condition) and an assessment is done from there.

A General Concern

Actually, I was a little shocked that the doctor in question said her process for a child would be to pass immediately to CAMHS (child mental health services) for a potential autism diagnosis too; even though a direct channel is available. It seems like putting a strain on services that are already pushed to the brink. I feel this is inefficient, indirect and an overall much longer approach.

The impression I get is that there might be problems with understanding mental health and autism not only for society as a whole but also in the health system itself. This worries me greatly and is extremely disturbing to think about. I hope my observations are wrong.

Follow Up

On leaving the GP, I was told that someone from the surgery or the community mental health team would reach out. A week later, I had a missed call from a community mental health worker asking me to call back in the hour. Phone calls are a source of anxiety for me, not knowing who is calling what it is about or being given a deadline without context is quite scary. When I spoke to her, she asked if I wanted to go ahead with an autism and mental health assessment at one of their centres. I tried to get more information and context as to what to expect but couldn’t get any. Instead she simply said that if I choose to go ahead, I will receive a letter with an appointment in the next few days. Of course I proceeded.

In reality, I got the letter three weeks later. Less than a week before the actual appointment. Afterwards, I received a call two days before the same appointment to say they double booked. Mistakes happen though and I can’t assume this is a common occurrence.

Conclusion

In order to get a referral for an appointment to assess whether I have autism; I had to visit the GP and speak to the community mental health team. Throughout this process information has been lacking and anxiety inducing. I am not sure what exactly happens at my next appointment. All that I know for sure is that there are assessments involved with the mental health team.

Given my situation and struggles, going for this referral is required. I need answers. The problem is that there is a lot of uncertainty about what the whole procedure is; even from the people directing me through it. It is an anxiety and trigger minefield essentially. What it all comes down to is that it isn’t simple and straightforward getting a referral for autism as an adult.