Asperger's Syndrome Diagnosis and Referral.
This section of the website will concentrate on people who feel the need to obtain a diagnosis of Asperger's Syndrome.
Why get a diagnosis?
There are some people with an ASD who may never obtain a proper diagnosis and still manage to live full and capable lives. This outcome depends on the person's level of ability and most people with an ASD will usually benefit from a proper diagnosis. Receiving a proper explanation of their condition can:
- bring a sense of relief (both for the individual and the family)
- allow access to services they would otherwise not be entitled to or aware of
- bring about a better understanding of how to deal with any problems the individual with an ASD may have
- give families access to a range of financial help
- help signpost to a range of therapies/approaches which may help an individual with an ASD to cope and learn.
Firstly, the person pursuing a diagnosis should read the 'About Asperger's' page, particularly the aspects of various traits of Asperger's Syndrome. Although being classified as being on the Autistic spectrum, there are attributes to Asperger's which vary from standard or atypical autistic traits. Some of which are as follows:
- DIAGNOSTIC
CRITERIA FOR ASPERGER'S DISORDER (SZATMARI, ET AL. 1989)
A. Solitary, as manifested by at least two of the following four:
1. No close friends.
2. Avoids others.
3. No interest in making friends.
4. A loner. - Does not meet criteria for Autistic Disorder.
- A lack of any clinically significant general delay in
language or
cognitive development. Diagnosis requires that single words should have
developed by two years of age and that communicative phrases be used by
three years of age or earlier. Self-help skills, adaptive behaviour and
curiosity about the environment during the first three years should be
at a level consistent with normal intellectual development. Motor
milestones may be somewhat delayed and motor clumsiness is usual
(although not a necessary feature).
Qualitative impairment in reciprocal social interaction. - There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behaviour(other than social interaction), and curiosity about the environment in childhood.
- Criteria are not met for another specific Pervasive
Developmental
Disorder, or Schizophrenia. - Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.
- Asperger's Disorder appears to have a somewhat later onset than Autistic Disorder, or at least to be recognised somewhat later.
- At younger ages, one might see the child being a bit more rigid and apprehensive about changes or about adhering to routines. This can lead to a consideration of OCD but it is not the same phenomenon.
- A few people with Asperger syndrome are very successful and until recently were not diagnosed with anything but were seen as brilliant, eccentric, absent minded, socially inept, and a little awkward physically.
Many people with Asperger's manage to lead a (relatively) normal life, holding down a job, getting married and raising children. People may not even be diagnosed with Asperger's syndrome until very late in life, this could be in their 30's, 40's or even later. One 70 year old man being diagnosed in recent years. Self-diagnosis may be enough for most people with Asperger's, not feeling the need to get a referral from their GP for a formal diagnosis. Many in computing, the arts and so forth lead their lives with no ill effect whatsoever. Problems may however stem from certain aspects such as co-worker interaction, social functions, or indeed marital relationships.
Once established in an individual, Asperger's syndrome should not be used as a point of negativity, rather than a 'disability', Asperger's can therefore be re-classified as an 'ability'. There has been much made in recent years of people with Asperger's who commit crime using the label as some form of excuse (usually by some form of legal body of representation) for what they have done. Oddly then, that within the same articles we see some form of impairment of intelligence of the individual, when part of the criteria for Asperger's Syndrome is for an IQ of average and above, in many cases well above the average. It has been noted that many individuals with Asperger's enjoy a continued education in later life and this enables them to expand on aspects of a particular talent / obsession they have and also to continue a solitary pursuit they may have a leaning towards.
Some famous people portrayed as having Asperger's Syndrome are as follows:
- Alan Turing - Computer Scientist and Code breaking expert.
- Andy Warhol - Artist.
- Dan Aykroyd - Comedian and Actor.
- Richard Stallman - GNU / Linux Software Engineer.
- Bill Gates - Some computer bloke ;-)
- Charles Darwin - Naturalist.
- W.B. Yeats - Poet and Dramatist.
- Paul Dirac - Mathematician and Physicist.
- Bram Cohen - Software Engineer.
Asperger's Syndrome and High Functioning Autism Diagnosis.
The NAS have some pointers for those wishing to have a formal diagnosis, I have listed some of these in the section below, should this be an avenue you would wish to go down.
Adults:
Gaining a diagnosis as an adult isn't easy, especially as Asperger syndrome isn't widely heard of among GPs. The typical route for getting diagnosed is to visit your GP 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 AS 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/Asperger syndrome and/or you have been in touch with The National Autistic Society.
Describing the triad of impairments
You should then explain why this is relevant to you. AS is characterised by something known as the triad of impairments. People with AS 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 autistic 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 AS will have problems in the following three areas:
Social communication
People with AS 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
- they may not be aware of what is socially appropriate and have difficulty choosing topics to talk about
- they may not be socially motivated because they find communication difficult, so they may not have many friends and they may choose not to socialise very much.
Some of these problems can be seen in the way people with AS 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.
Social understanding
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.
Imagination
This can be a slightly confusing term. People often assume it means that people with AS 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 AS are extremely able writers, artists and musicians. Instead lack of imagination in AS 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 organising 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 AS over-compensate for this by being extremely meticulous in their planning, and having extensive written or mental check-lists.
Secondary traits of Asperger syndrome
Besides the triad of impairments, people with AS tend to have difficulties which relate to the triad but are not included within it. These can include:
- obsessive compulsive behaviours, often severe enough to be diagnosed as obsessive compulsive disorder (OCD);
- 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 AS 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 AS, but if you have any of them you might want to describe it in order to back up your case.
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.
If you require further information please contact the NAS Autism Helpline (tel: 0845 070 4004; email: autismhelpline@nas.org.uk
Children:
Autistic spectrum disorders can normally be diagnosed at around the age of two years. In many instances professional workers may spot the tell-tale signs of autism via the normal childhood health checks and this will eventually result in them being formally diagnosed.
If this does not happen and you feel that there is a possibility that your child has an autistic spectrum disorder you should go to your GP and request that they refer them to a consultant or diagnostic team with a good understanding of the condition.
Due perhaps either to financial constraints or lack of knowledge about autistic spectrum disorders some GPs are unwilling to refer people on. Unfortunately you have few legal rights in this situation. Under the Patients Charter you can request to see a consultant of your choice or seek a second opinion if you are dissatisfied with the first, but only with the agreement of your GP. However, being assertive and persistent can help. You might also find the following tips useful;
- Prepare notes on what you want to say to your GP prior to your appointment
- Keep a diary to record any unusual behaviours exhibited by your child and their frequency
- Supply your GP with some NAS information on autism or encourage them to contact the NAS Information Centre (tel: 0845 070 4004, email: nas@nas.org.ukif they have any specific questions on the condition
- If part of a group practice, ask to see one of the other doctors
There are a number of different doctors and health professionals who
may be involved in diagnosing the condition. Most frequently though
these would be psychiatrists, clinical psychologists and, in the case
of children, paediatricians. In some areas there may be
multi-disciplinary teams (i.e. made up of a number of different health
professionals) involved in diagnosing autism. It is important to ensure
that whoever sees your child has a good knowledge of autistic spectrum
disorders.
The NAS Lorna Wing Centre for Autism aims to be a centre of expertise and excellence in the field of autism and would be a very appropriate place for someone to go to find out if their child has an autistic spectrum disorder. However, it is not the only option as there are a growing number of health professionals with an interest in the condition and it is therefore quite possible that there may be someone relatively local to you who could make a diagnosis. If you do see someone local there is the extra benefit that they may be able to advise you on sources of help in the vicinity and possibly offer some kind of follow up service.
Some of this page is taken from the NAS help pages.
Some useful links:
http://www.autism.org.uk/dcs-cheshirehttp://www.autism.org.uk/nas/jsp/polopoly.jsp?d=1821http://www.nhs.uk/Conditions/Autistic-spectrum-disorder/Pages/Diagnosis.aspx?url=Pages/What-is-it.aspxhttp://www.nhs.uk/Livewell/Autism/Pages/Diagnosisinadults.aspx
