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 Asperger syndrome.
Describing the triad of impairments
You should then explain why this is relevant to you. Asperger’s syndrome is characterized by something known as the triad 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 facial expressions
• 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 difficult
• 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 emotions
• anxiety in social situations and resultant nervous tics.
Typical examples of difficulties with social understanding include:
• 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 as:
• an obsession with rigid routines and severe distress if routines are disrupted
• 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 you.
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 as Obsessive compulsive disorder
• 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 of routines;
• depression 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.
Click here 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