To The Person Who Thinks That They Might Be Autistic

To the person who thinks that they might be autistic,

I imagine you have gone your entire life wondering why you are different, why you can’t seem to understand things the way that others can and why everything just seems so hard for you. I’m proud of you for getting this far.

Part of you might be thinking: “But if I was autistic, surely it would have been noticed when I was young? So maybe I’m just making this up.”

I want to tell you that so many autistic people aren’t diagnosed until they are adults, if they are diagnosed at all. You would not be the first and you certainly won’t be the last.

“My family and friends don’t think that I could be autistic”.

People’s understandings of autism tend to be based off of the media, which doesn’t show every possible presentation of autism. Their understandings are also based off of autistic people they know, and all autistic people present differently, so this is not an adequate understanding to judge whether you are autistic or not. People’s perceptions of autism can also be based off of stereotypes, for example, ‘autistic people can’t make eye contact, so you can’t be autistic’. While it is true that for some autistic people, eye contact is very difficult, this isn’t true for all autistic people. Here you can begin to see how one presentation of autism can’t possibly fit everyone.

There is a reason that the thought that you might be autistic is stuck in your head. Don’t ignore that, just because other people tell you that you’re ridiculous. You may have spent your life not believing your instincts and trying to conform. It’s time to put yourself first.

Of course, you may experience the opposite. People you know may be encouraging you to get assessed for autism. This could bring up a whole load of different and conflicting emotions. But what is important to remember is that what you decide to do is your choice, no-one else’s.

“Do I have to get diagnosed?"

Of course you don’t. Although it may be harder to access more formal support, you can still access informal support groups and the #ActuallyAutistic twitter community, and you can still get involved with some autism charities such as The National Autistic Society. Many autistic people are supportive of others being self-diagnosed. We know that significant barriers to getting a diagnosis exist, especially for marginalised groups. We also know that not everyone wants a diagnosis on their records.

If you identify as autistic, then you’re welcome in our community.

I know that getting a diagnosis meant a lot to me. It almost gave me permission to stop beating myself up for not understanding things the way that I thought I was supposed to understand them. It also gave me permission to stop beating myself up for not fitting in. It gave me permission to be kinder to myself. And it helped me understand myself more.

“How would I get diagnosed if I wanted to?”

In the UK, there are two routes for this. The first is through the NHS. This would begin with you going to your GP and asking for a referral for an autism assessment. Due to some GP’s having a limited understanding of autism, I would be prepared. Take a list of reasons why you think you’re autistic to show them and talk about. Take someone with you for support if you feel able to. If you’re an autistic woman, maybe show them some sources on autism in women if they are reluctant to believe you. This should all go smoothly, but you are always entitled to a second opinion, and one professional saying that they don’t think you are autistic does not mean you aren’t.

The waiting list for an NHS assessment can take a year or two unfortunately. Additionally, the screening and assessment they use may not be enough to pick up on autistic traits that present differently to the biased white cis-male model that it is based off of. In which case, you can go for a private assessment. You may choose for this to be a place which specialises in autistic women for example. Or a place which uses an alternative assessment model, such as the DISCO model used by the Lorna Wing Centre. Your assessment may be more comprehensive and it will be done a lot faster, but unfortunately it is very expensive and hence inaccessible to a lot of people.

Some people argue that a private diagnosis won’t be taken as seriously because you have “bought” your diagnosis, but most don’t have a problem with this (this tends to be more of a problem with ADHD because of complications when it comes to prescribing medication). I have never been asked where I was diagnosed and my diagnosis has always been accepted straight away. Really they have no right to not accept your diagnosis just because it’s private, so you can always ask to see someone else if that happens.

I would recommend that alongside this process you read or watch as much as you want to around autism, and chat to other autistic people. This will help you to understand the way your brain works, get to know your sensory needs more and work out what helps you to manage!