DIAGNOSIS OF AUTISM SPECTRUM
DISORDERS IN ADULTS
Autism and Asperger's syndrome Associations often
get calls from adults who suspect they may have Asperger
syndrome or high-functioning
autism (HFA) and are looking for a diagnosis.
In this article the term Asperger syndrome is used to include all
forms of high-functioning autism.
Gaining a diagnosis as an adult isn't easy, especially as Aspergers
syndrome isn't widely heard of among doctors. The typical route
for getting diagnosed is to visit your doctor and ask for a referral
to a psychiatrist or clinical psychologist, preferably one with
experience of diagnosing autism.
If you are already seeing a specialist for other reasons, for example,
a psychologist because you suffer from depression,
then you might wish to ask them about a referral instead.
It can be very hard to convince your doctor that a diagnosis would
be either relevant or necessary. The following are just some tips
on how to present your case so that they can see both why you might
have Asperger's syndrome and why having a diagnosis could be helpful.
Ways to bring up the subject with your doctor
Make sure the diagnosis is the only thing you
are seeing your doctor about. If you try and drop it into a consultation
about another subject they may not address it fully. A good way
to bring up the subject is to mention that you have been reading
about autism and
Describing the triad of impairments
You should then explain why this is relevant to
you. Asperger's syndrome is characterized by something known as
of impairments. People with Asperger's syndrome will be affected
in some way by each of these impairments. I have given some suggestions
below for ways in which you could describe how the triad of impairments
relate to you. The autism spectrum is very broad and two people with the condition may
present very differently. No one person will have all the traits
but by and large most people with Asperger syndrome will have problems
in the following three areas:
People with Aspergers syndrome may be very good
at basic communication and letting people know what they think and
feel. Their difficulties lie in the social aspects of communication.
For example they :
• may have difficulty understanding gestures, body language and
• may not be aware of what is socially appropriate and have difficulty
choosing topics to talk about
• may not be socially motivated because they find communication
• may not have many friends and they may choose
not to socialize very much.
Some of these problems can be seen in the way people with Aspergers
syndrome present themselves. For example classic traits include:
• difficulty making eye contact
• repetitive speech
• difficulties expressing themselves especially when talking about
• anxiety in social situations and resultant nervous tics.
Typical examples of difficulties with social understanding
• difficulties in group situations, such as going to the pub with
a group of friends
• finding small talk and chatting very difficult
• problems understanding double meanings, for example not knowing
when people are teasing you
• not choosing appropriate topics to talk about
• taking what people say very literally.
You might want to back this up with specific examples of the kind
of social situations you find difficult.
This can be a slightly confusing term. People
often assume it means that people with Asperger syndrome are not
imaginative in the conventional use of the word, for example, they
lack creative abilities. This is not the case, and many people with
Asperger's syndrome are extremely able writers, artists and musicians.
Instead lack of imagination in Asperger's syndrome can include difficulty
imagining alternative outcomes and finding it hard to predict what
will happen next. This frequently leads to anxiety. This can present
• an obsession with rigid routines and severe distress if routines
• problems with making plans for the future, and having difficulties
organizing your life
• problems with sequencing tasks, so that preparing to go out can
be difficult because you can't always remember what to take with
Some people with Aspergers syndrome over-compensate for this by
being extremely meticulous in their planning, and having extensive
written or mental checklists.
Secondary traits of Asperger syndrome
Besides the triad of impairments, people with
Aspergers syndrome tend to have difficulties which relate to the
triad but are not included within it. These can include:
• obsessive compulsive behaviors, often severe enough to be diagnosed
• these can also be linked to obsessive interests in just one topic,
for example they might have one subject about which they are extremely
knowledgeable which they want to talk about with everyone they meet;
• phobias: sometimes people with Asperger syndrome are described
as having a social phobia but they may also be affected by other
common fears such as claustrophobia and agoraphobia;
• acute anxiety, which can lead to panic attacks and a rigid following
and social isolation: this is especially common among adults;
• clumsiness often linked to a condition known as dyspraxia.
This includes difficulties with fine motor co-ordination such as
difficulties writing neatly as well as problems with gross motor
co-ordination such as ungainly movements, tripping, falling a lot
and sometimes appearing drunk as a result.
Not having these associated problems does not mean you do not have
Asperger's syndrome, but if you have any of them you might want
to describe it in order to back up your case.
You don't need to go and describe every single
one of these features. Your doctor may be more likely to respond
if you give one good example from each area of the triad. Once you
have explained why you think you have Asperger's syndrome to the
doctor you could also show them this fact sheet.
What if the doctor disagrees?
If your doctor disagrees with your argument, 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.
Reasons why you might need a diagnosis
Diagnosis in adulthood can be a mixed blessing.
Some people decide that they are happy with self diagnosis and decide
not to ask for a formal diagnosis; for those that do there are a
variety of benefits:
Many of the people we speak to have suffered from
mental health problems and/or have been misdiagnosed as having mental
health problems such as schizophrenia. They have known that they
have specific difficulties for a long time without being able to
explain them. A firm diagnosis can be a relief because it allows
them to learn about their condition and understand where and why
they have difficulties for the first time.
Gaining the understanding of others
Many people suffer the consequences of being constantly
misunderstood. Often the fact that someone has Asperger's syndrome
can lead to teasing, bullying and social isolation. When the people
close to you are able to understand that there is a reason for your
difficulties it is much easier for them to empathize with your position.
Receiving services appropriate to their needs
Adults with Asperger's syndrome may need support
with day to day living (this is only the case for some people and
many others have no support needs). If they are having these needs
met it may be by people who do not understand Asperger syndrome
and the specific difficulties associated with it. With a diagnosis,
you may be able to access autism-specific services if they exist
in your area.
Joining the Asperger's syndrome community
It can be helpful to meet up with other people
who have the condition in order to learn about their experiences
and share your own. There are some support groups available in some
regions, check with your nearest autism or Aspergers association.
Another good way of contacting people with Asperger syndrome is
through the internet. You do not have to have a diagnosis of Asperger's
syndrome in order to access this support. Click here
to look as various forums and websites worth checking out.
Gaining a diagnosis can be difficult and very few adults find it
easy. You are the only person who can decide if this is the best
choice for you.
© The National Autistic Society 2003 This information
is reproduced with the kind permission of The
National Autistic Society who have many useful fact sheets on
their site. Copyright is retained by www.autism.org.uk and their
permission must be obtained to reproduce their material.
to read personal stories by adults with Asperger's syndrome.
Click here to go to the
home page to view the full range of autism fact sheets at www.autism-help.org