Diagnosis in adulthood can be a mixed blessing. Some people are happy with self-diagnosis and decide not to ask for a formal diagnosis. Others prefer to seek a diagnosis.
If you do get a formal diagnosis of autism (including Asperger syndrome) there can be a number of benefits. These include being able to access autism-specific services, claim financial support more easily and, possibly, gaining a deeper understanding of your condition.
Getting a diagnosis can be difficult and few adults find it easy. You are the only person who can decide if this is the best choice for you.
For a long time describing my life as a train wreck would not have been far from the truth. [But] this was all before I was diagnosed with Asperger syndrome.
A year later, I've resumed my full-time education, I have new friends and interests, and work hard towards many goals and ambitions. It's not easy but I'm on track now.
Now I am at the wheel and in control of what I am doing with my life to a far larger extent. Andre, an adult with Asperger syndrome
Understanding yourself
Lots of adults with autism who we speak to have known they face certain difficulties for a long time without being able to explain why. A formal diagnosis can be a relief because it allows you to learn about your condition, to understand why you find some things difficult and, indeed, why you might be very good at some things.
Sometimes, adults with autism have been misdiagnosed with mental health problems such as schizophrenia. This may mean they have received inappropriate treatment or services but with a formal diagnosis of autism, this can be rectified.
On the other hand, some adults have mental health problems that can be better addressed once their autism has been identified.
Gaining the understanding of others
Having had a diagnosis, you can tell family, friends and colleagues about it (if you want to), perhaps giving them some information such as our leaflets What is autism? or What is Asperger syndrome? This helps other people to understand autism. When the people close to you understand that there is a reason for your difficulties, it's much easier for them to empathise with you and offer you support, if they need to.
Joining the autism community
It can be helpful to meet other people with autism, to learn about their experiences and share your own. There are several ways to do this.
- Join our online community, which is open to all people with autism over the age of 16: www.autism.org.uk/community
- Subscribe to Asperger United, a free quarterly magazine written by, and for, people with autism. It is published by The National Autistic Society; visit www.autism.org.uk/aspergerunited to find out more.
- Join a social group for adults with autism or Asperger syndrome. Social groups operate across the UK and are a chance to meet people with similar experiences to you, and to socialise. Our Autism Helpline can tell you if there are any social groups in your area; tel: 0808 800 4104 (open Monday-Friday, 10am-4pm).
You don't need to have a diagnosis of autism to join our community or to subscribe to Asperger United. However, you may need a diagnosis to join a social group.
Finding services to suit your needs
Having a diagnosis is the key to getting autism-specific support - that is, support that is provided by people who understand autism and the specific difficulties associated with it.
Some examples of autism-specific services are housing that has been designed for adults with autism; social groups for people with autism; or specialist employment services such as Prospects, which is run by the NAS. You would need a diagnosis to access any of these services.
In order to access services, people generally ask for an assessment of their needs to be carried out by their local social services department (social work services in Scotland; health and social services trusts/boards in Northern Ireland). It's possible to get help from social services without a diagnosis by being considered a 'vulnerable adult'. However, having a diagnosis should strengthen your claim for support.
Benefits
You can apply for benefits such as Disability Living Allowance without a diagnosis, but your application will be stronger with a clear diagnosis. If you're a student and you have a diagnosis, you can claim Disabled Students Allowance. For more information about benefits, see www.autism.org.uk/benefits
Help at work
Some people choose to get a diagnosis for reasons connected to work. Perhaps they're having problems getting a job, they have a job but are worried they will lose it, or they feel misunderstood by their colleagues or employer.
Once you have a diagnosis of autism you are classed as having a disability under the Disability Discrimination Act 1995.
Under the Disability Discrimination Act 1995, employers have a responsibility to make 'reasonable adjustments' for staff who need them. Reasonable adjustments could mean a variety of things: for example, providing clear, written instructions rather than verbal instructions, or structuring a staff member's day. You might decide to get a diagnosis so that you can ask your employer to make reasonable adjustments for you at work.
Employers may not know a lot about autism, so our employer information pack can be useful. There is also a pack to help people who are looking for work. You can download both of these packs from our website.
More information
If you are thinking about getting a diagnosis but would like to talk to someone and get more information, you can call our Autism Helpline on 0808 800 4104 (open Monday-Friday, 10am-4pm). Calls are free from landlines and most mobiles.