You may be wondering if you are autistic. Perhaps you have read something about autism, or seen a programme on TV, and think that it describes some of your own experiences.
It’s quite common for people to have gone through life without an autism diagnosis, feeling that somehow they don’t quite fit in. Many people learn to cope with life in their own ways, although this can be hard work. They might be married or living with a partner, have families or successful careers. Others may be more isolated and find things much more of a struggle.
It is up to you whether you decide to seek a diagnosis and some people are happy to remain self-diagnosed. The only way to know for sure whether you are autistic is to get a formal diagnosis.
Benefits of a diagnosis
Some people see a formal diagnosis as an unhelpful label, but 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 friends) to understand why you may experience certain difficulties and what you can do about them
- it may correct a previous misdiagnosis (such as schizophrenia), and mean that any mental health problems can be better addressed (however, it can be difficult to make a diagnosis of autism if you have severe mental health issues, or if you are having treatment
- it may help you to get access to appropriate services and benefits
- you will be entitled to have reasonable adjustments made by your employer, college or university
- it may help women, and those with a demand avoidant profile, who may not before have been recognised as autistic by others
Although you don’t need to be diagnosed to have self-belief, some autistic people welcome the diagnosis as a way of making sense of their life experiences and being able to identify with other autistic people.
Getting a diagnosis – the process
Autism (including Asperger syndrome) varies widely from person to person, so making a diagnosis can be difficult. In Jersey, this diagnosis will be made by the Jersey Adult Autism Service team.
The first port of call will be a referral from your GP, or other professional such as your psychiatrist, if you are seeing one.
Step 1: speak to your GP
Book an appointment with your GP. Make sure your diagnosis is the only thing you are seeing your GP about. If you try to mention it during a consultation about another subject, your GP may not address it fully.
Step 2: present your case
Your GP needs a reason to refer you for diagnosis, so you will have to explain why you think you could be autistic, and how a diagnosis would benefit you. If you think you might want help with this, 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 Jersey, or The National Autistic Society. You could say that you think you experience some of the difficulties people on the autism spectrum can face, and you would like to seek a formal assessment to be sure. Try to give your GP some examples of difficulties you’ve had in adulthood and childhood with communication, social interaction, sensory difficulties, friendships or employment, and the need for routine, and how much you think these affect the different areas of your life.
YOUR GP’S RESPONSIBILITIES
Not all GPs will have an in-depth knowledge of autism, so it’s important to explain things as clearly as you can. Taking a copy of the National Autistic Society’s guidance for GPs might be helpful.
Step 3: getting a referral
If your GP agrees to refer you, you will then be referred to the Jersey Adult Autism Service, who can also be contacted at JAAS@health.gov.je
Once you have been referred, there is no more involvement from your GP.
WHAT IF MY GP DOES NOT REFER ME?
If your GP decides not to refer you for a diagnosis, ask for the reason why. If you don’t feel comfortable discussing their decision then and there, you can ask for a second appointment to talk it through. You could ask to see another GP at the surgery.
You will see a team at JAAS for your assessment. Waiting times vary. You can take someone with you when you go for a diagnosis if you like. The diagnosis process will likely take multiple sessions.
The team or professional might ask you to bring an ‘informant’ with you – someone who knew you as a child, such as one of your parents or an older sibling. This is because they may be able to give important information about your childhood.
A diagnosis is not a medical examination. You don’t need to be examined physically and shouldn’t be asked for any samples, such as blood.
HOW WILL THEY DETERMINE THAT I AM AUTISTIC?
The characteristics of autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests (this includes sensory behaviour), since early childhood, to the extent that these ‘limit and impair everyday functioning’.
There are several ‘diagnostic tools’ available, and diagnosticians aren’t obliged to use a specific tool. The tool is likely to involve a series of questions about your developmental history from when you were a young child (for example, about language, play and cognition).
You may be asked to perform various tasks during the assessment, which may seem silly at first but are important in the diagnostic process.
WHEN WILL THEY TELL ME THE RESULT?
The diagnostician will tell you whether or not they think you are autistic. They might do this on the final day of the assessment, call you at a later date, or in a written report that they send to you in the post.
The report may say that you present a particular autism profile, such as an Asperger syndrome or demand avoidant profile. Diagnostic reports can be difficult to read and understand in places. You can call the diagnostician to talk through any parts of the report that you find unclear.
If diagnosed with an Autism spectrum condition, you will be invited to take part in a post-diagnosis workshop, to help you understand your diagnosis better.
Step 5: coming to terms with the results
IF YOU ARE TOLD YOU ARE NOT AUTISTIC
Sometimes people are told they aren’t autistic, and sometimes they may be given a diagnosis they don’t agree with.
You can seek a second opinion, which either means going back to your GP to explain that you aren’t happy with your diagnosis and ask them to refer you elsewhere, or paying for a private assessment.
If you go for a second assessment, remember that it may reach the same conclusion as your first.
IF YOU GET AN AUTISM DIAGNOSIS
If you are diagnosed as autistic, you may have a lot of questions. You might be wondering how you can find out more about your condition, meet other autistic people, or access services and support. The Jersey Adult Autism Service (JAAS) will invite you to take part in a six week workshop where you will meet other people who have been recently diagnosed with Autism and learn more about your diagnosis.
You can also visit the JAAS drop-in advice service, which is a weekly drop-in session from 1.30 pm to 4.30 pm on a Tuesday afternoon at St James’ Centre, Le Breton Lane, St Helier. For more information, call 445723 or email JAAS@health.gov.je
Support does not automatically follow diagnosis, but having a formal diagnosis does mean that you are more likely to be able to access services and claim any benefits you are entitled to. Not everyone feels they need further support – for some people, simply getting a diagnosis seems to be enough.
Information correct at time of publication. Some of this content is adapted from information from the National Autistic Society