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Understanding Autism

Getting a diagnosis

I think I might be autistic. What do I do?

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That’s great! It can feel really good to discover that other people share a lot of similar experiences to you.

It’s common to realise you might be autistic after a family member, particularly your offspring, is diagnosed.

It’s also quite common nowadays to find out you might be autistic because you relate to a lot of autism memes, posts, and other peoples experiences online!

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Referral

The first thing to do is take a questionnaire called “AQ50”. You can do this online by Googling AQ50. It has 50 questions, and can give you an indication as to whether you are autistic.

If this test indicates that you might be autistic, then you go to your GP and ask for a referral. In Nottingham, you should be referred to “Neurodevelopmental Specialist Service, The Pines, Highbury Hospital”.

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Your GP might want to know why you want a referral. Here, you can show them your AQ50 results, and if you feel able, describe some of your experiences.

Your GP should not refuse you this referral. If they do, you can say “I would like you to write in my notes that I asked for this referral and you said no.” You should then go to a different GP to ask again. If you are in the Nottinghamshire area, our advocacy service can support you with this.

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Before the referral goes through, your GP might want you to do an “AQ10”. This is like the AQ50 but with only 10 questions.

Then, you have to wait. There is quite a long wait time, upwards of 24 months in Nottingham.

If you don’t want to wait this time, there are some options, including “right to choose” and paying for a private assessment.

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Assessment

When it is your turn for an assessment, you might be seen in person, or you may be assessed virtually.

They might want to talk to a parent if one is available & you and them are happy for them to be involved. This is because they want to hear about how you developed as a young child. However, this isn’t essential, so it’s okay if you can’t do this. If you are a twin or triplet, they might want to talk to your sibling(s).

Then, they will talk to you about your experiences. This might take the form of a general conversation, but sometimes takes the form of an ADOS. An ADOS is a series of short tasks and activities which helps the assessor to determine whether or not you are autistic.

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Outcome

After your assessment, you will wait for an outcome. If you are unhappy with your outcome (e.g. they say you did not meet diagnostic criteria for autism, but you believe you are autistic), you are entitled to a second opinion.

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If they do diagnose you as autistic, then you can look into what support is offered in your area. In Nottinghamshire, we offer a PA service who can help support you in the home and community, as well as running social and supportive events where you can meet other autistic adults.

You can apply for Personal Independence Payments (PIP). You can apply for a Social Care Needs Assessment from your local council. You can disclose your diagnosis to your employer in order to ask for reasonable adjustments within the workplace.