The Journey to Diagnosis

popocatepetl Mexico df volcano from sky

By Autistic Phoenix

FAQ: The Journey to Diagnosis

This page is a collection of Frequently Asked Questions that I’ve seen, and asked myself, on the journey that starts, roughly speaking, when you decide that you’d value a professional opinion on whether you’re autistic or not – typically starting with a visit to your GP.

Q: Can I really be Autistic? I’m just me – aren’t I?

A: Yes, you can

Living with undiagnosed autism for as long as you have, has probably meant that you’ve simply become used to the way that it affects you, and of course, this is “normal for you”. It can be quite a revelation that your version of normal is actually quite different from the “normal” that most people experience, and this can take some adjusting to.

Q: Am I just making this up?

A: Probably not

It’s quite common, again because you’ve lived with and coped with the way you are for so long, to think that you’ve suddenly become hypochondriac and invented your autism. But think about it like this: if you were making it up, why did you choose to make up a story about autism? Why not ADHD? Why not schizophrenia? Why not bipolar? Something about autism made you identify with the symptoms. It is of course possible that you have several personality traits that are common with the symptoms of autism, but that’s what a formal diagnosis will help you to understand, and why it’s worth getting referred for one even if you expect that the outcome might be negative; either way, knowledge is power.

Q: What should I take to my GP?

A: Your reasons for thinking that you’re autistic, and maybe an AQ10

Take along a collection of your thoughts as to why you think you may be autistic. It helps to write it down so that you don’t forget anything, and often GPs will be happy for (or ask) you to leave it with them to read through later. In the UK, GPs are encouraged to refer you on if you score above 6 out of 10 on the AQ10 (a ten question version of the AQ50) so it would do no harm to download a copy, fill it in, and take it along with you. You might well be asked to fill in the surgery’s official printed version as this will have your NHS number on – but you could transfer your answers across in a few seconds.

Q: Why do I feel more Autistic now that I’ve been referred for diagnosis?

A: Because you’ve relaxed and stopped masking so much

This is another common stage of the journey to diagnosis.

Once you realise that autism provides an explanation for your behaviours and feelings, and that you’ve been compensating for your differences by using intellectual and conscious brainpower to emulate the behaviours you see around you (i.e. masking), and that those efforts have been exhausting, you’re likely to feel a) that you’re justified in cutting yourself some slack and not carrying on with that enormous effort, and b) test yourself and, figuratively speaking, prod yourself whilst looking in a mirror to see your true autistic self more clearly.

In other words you stop making huge efforts to mask, and allow your autistic self to be seen, perhaps for the first time.

Q: What will getting a diagnosis give me?

A: It depends

It depends on how your symptoms limit your everyday life, and on what you want out of the diagnosis. Some things follow from the diagnosis legally, for instance the right to a Care Needs Assessment and rights under the Equalities Act 2010 (though you can get these without a diagnosis). You also gain access to the resources of Access to Work.

But the main point of this question is usually “What difference will it make to how I approach life?” and the answer to that depends on so many things that it’s hard to give a one-size-fits-all answer. But what it will do is eliminate or at least drastically reduce the uncertainty you might have about your inner make-up, and allow you to focus on the future. It should also stop you being quite so hard on yourself.