Adult Diagnosis
Am I Autistic?
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Pre-diagnosis support – a guide for adults who think they might be autistic
If you think you may be autistic, you might want to receive a formal diagnosis. There are many online ‘autism tests’ available, however none of these can guarantee accuracy. This guide helps explain the benefits of receiving a diagnosis and how to receive a referral from your GP.
Am I autistic?
You may be wondering if you are autistic. Perhaps you have read something about autism, or seen a programme on TV, and think it describes some of your own life experiences.
It is quite common for people to feel like they somehow don’t quite fit into society and have gone through life without an autism diagnosis. Many people may find their own strategies to cope with life, although this can sometimes be hard work.
It is ultimately up to you to decide if you would like to seek a diagnosis. Some people are happy to remain self-diagnosed.
Benefits of a formal diagnosis
Some people may see formal diagnosis as an unhelpful label. However, for many, getting a timely and thorough assessment and diagnosis may be helpful because:
- It may help you (and your family, partner, employer, colleagues and/or friends) understand some of the barriers and challenges you might face and what you can do to overcome this.
- It may correct a previous misdiagnosis (e.g. schizophrenia, bipolar disorder) and mean that any mental health problems can be better addressed and treated.
- It may help you get access to appropriate services and benefits.
- You will be entitled to reasonable adjustments made by your employer, college or university.
- It may help women and those with a demand-avoidant profile, who may not have before been recognised as autistic by others.
- Although you don’t need to be diagnosed to have self-belief, some autistic people welcome having a diagnosis as a way of helping them make sense of their life experiences and being able to identify with other autistic adults.
How to ask for a diagnostic assessment
Some diagnostic teams will accept self-referrals, but in most areas, you will need a referral from your GP. If you are seeing a different health professional for other reasons (e.g. a psychologist if you have depression), you could ask them to make a referral for you instead.
Speaking to your GP
Book an appointment with your GP and make sure the diagnosis is the only thing you are seeing your GP about at the time. If you try to mention an autism assessment during a consultation for something else, your GP might not address this fully.
Presenting your case
Your GP needs a reason to refer you for a diagnosis, so you will need to explain why you think you might be autistic, and how you could benefit from a diagnosis. If you think you might need help during the appointment, you can ask someone you know to come with you.
Explaining your situation
You could say that you’ve been reading about autism, or that you’ve been in touch with autism charities/ societies. You may say that you think you experience some of the difficulties that autistic people might face, and you would like to seek a formal assessment to be sure.
Try to give your GP some examples of differences/ difficulties you might experience in both childhood and adulthood with:
- Communication
- Social interaction
- Sensory differences
- Friendships
- Employment
- Need for routine
Let your GP know how these affect the different areas of your life.
Not all GPs will have an in-depth knowledge of autism, so it is important to explain things as clearly as you can.
In England, your GP should be following NICE guideline 142 and be aware of the statutory guidance requiring a clear diagnosis pathway for adults.
In Northern Ireland, your GP should be following NICE guideline 142 and be aware of the Northern Ireland Autism Strategy and Action Plan.
In Wales, your GP should be following NICE guideline 142 and be aware of the Autism Spectrum Disorder Strategic Action Plan.
In Scotland, your GP should be following SIGN guideline 145 and be aware of the Scottish Strategy for Autism.
Getting a referral
When your GP refers you, it is recommended that you tell them about the local services that have experiences with multidisciplinary diagnosis of autism in adults. You may want to print out the details of diagnostic services in your area and take them with you.
If your GP is unable to refer you to a multidisciplinary team, you may be referred to an individual professional, such as a psychiatrist or clinical psychologist. This professional should be experienced in diagnosing autism in adults, as this will mean you are more likely to be accurately assessed and avoid going back to your GP to ask for a second referral.
Be aware that it can sometimes be difficult to find a service or professional with experience in diagnosing autism in adults.
Once you have been referred, there will be no other involvement from your GP.
Where will I be referred to?
You are most likely to be referred to a diagnostic service (e.g. a clinic or assessment centre) in your local Clinical Commissioning Group area (in England), your Health Board area (in Scotland), your Local Health Board (in Wales), or your Health and Social Care Trust area (in Northern Ireland). You may be referred to a service outside your area.
A person who has been referred for an autism diagnostic assessment has the right to choose a locally commissioned service in their area to undertake an assessment. Anyone who has waited longer than 3 months for the appointment is then able to ask to be referred to a different provider outside of their local area. Additionally, if there is not a local service being commissioned, they can also be referred to a different provider too.
A private diagnosis is always an option if you can pay for one. However, you may occasionally find that local service providers (e.g. social services) may not accept private diagnoses and will insist that you have an NHS diagnosis too.
What if my GP does not refer me?
If your GP decides not to refer you for a diagnosis, ask them for the reason why. If you don’t feel comfortable discussing the decision there and then, you can ask for a second appointment to talk it through. You could also ask to see another GP at the surgery.
If you want to complain about the referral, you can make a complaint.
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