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asperger's syndrome information and features


Definition Overlap Procedure Tests Reasons Reactions Spectrum Disclosure
Be Prepared
Seeing Your Doctor
The Referral Appointment

Children on the autistic spectrum can normally be diagnosed after the age of two years and it may be picked up on during the normal childhood health checks. However, according to the National Autistic Society in the UK the average age of diagnosis is as late as 9 years old, so parents and schools still have a large role to play in the diagnosis of children.

Because Asperger's syndrome has only really been recognised within the last 25 years, and barely heard about at all until during the last 15 years, many adults are still only just getting diagnosed after a lifetime of being different and not knowing why. Where this is the case people often self diagnose before going for a formal diagnosis, but in some cases it is picked up by medical professionals during treatment for some other condition such as depression.

There are many different routes to getting a diagnosis, but if you are not sure where to start, one of the first places you could try is your family doctor.

Step 1 - Be Prepared

Read the diagnostic criteria and make notes of some examples relevant to yourself or your child.

In the case of children, if they already spend time away from you at playgroup or school, perhaps speak to the teachers there casually as to how your child is fitting in and getting on. They may reveal something new or have noticed the same things as you. You could then mention this to the doctor to support your case.

If you are an adult  seeking a diagnosis for yourself you could ask your parents, other family members, or friends, if they can recall anything relevant from your childhood that you may not be aware of yourself.

You won't need to give the GP a life story. They just need to know that you have valid reasons for suspecting you or your child meet the diagnostic criteria and that it has been life long, not just a stage you or they are going through.

Practice talking about the issues you want to raise with someone you can trust... some things can be very difficult to say out loud for the first time. If you haven't got someone you can talk to then just practice saying them out loud to yourself or writing them down as you would like to say them. Don't feel embarrassed about taking some notes along with you to refer to if that would help.

Step 2 - See Your GP

Make an appointment to see your GP just about the Asperger's Syndrome... don't try and tag it on to the end of a consultation about something else.

Your GP will not actually diagnose you themselves. What you are asking your GP for is a referral to a specialist. The doctor will not want to do this unless they feel there is good cause to do so. They will probably want to know how you came to find out about Asperger's syndrome, what examples of meeting the diagnostic criteria you can give, and why you want a diagnosis.

Some doctors might be suspicious of your motives and be reluctant to refer you, so it is important to be persistent and quite clear about how important it is to you. If they still refuse to refer you for further assessment, but they have not convinced you that you or your child do not have Asperger's Syndrome, then you could ask to see another doctor. 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, however this is only with the agreement of your GP, so it might not get you very far. If you are in the UK you could contact the NAS for further help and advice on their helpline... 0870 600 85 85 (Mon -  Fri 10am to 4pm), and other countries have similar organisations that can offer help and advice.

Your doctor may be very willing to refer you but not be sure who to refer you to. They may ask you to leave it with them and they will find out who the relevant authority is and get them to contact you about an appointment. It is quite usual to have to wait a few weeks. If they need advice or information themselves they could contact The Centre for Social and Communication Disorders on tel. 020 8466 0098 or The NAS Information Centre for Health Professionals on tel. 020 7903 3599.

Step 3 - The Referral Appointment

I think the term diagnosis is actually quite misleading, as it is more like a professional opinion that you are obtaining. The value of the opinion depends on the knowledge and experience of the professional who gives it, but most of all on how much value you place on it yourself. What a diagnosis certainly isn't is a pass or fail test.

A number of different doctors and health professionals may be involved in actually diagnosing you or your child. They are likely to be psychiatrists or clinical psychologists or possibly paediatricians. You may have more than one appointment and see more than one specialist or a team of specialists, and it could take a long time until you get anything confirmed. It is important to ensure that whoever and whatever the consultant and/or diagnostic team is that they have some experience of diagnosing Asperger's Syndrome.

The nature of referral appointments can vary. Sometimes they will be happy just to interview you, sometimes they will want to speak to family too, and they might do some simple psychological tests, but then again they don't have to and they might not.

Remember it is quite natural to feel nervous or even frightened about going for a diagnosis. It can involve talking about things you find painful or embarrassing, you might not get the answer you want, and as things are you probably won't get very much, if any, support in coming terms with it after. Having been through the process though I certainly feel for me that it was worth it, and even though there is the potential for it to be a difficult and unpleasant experience, it isn't always, so if it really matters to you, dip your toe in the water and speak to your GP.

Further reading available from Amazon.com  or Amazon.co.uk

Definition Overlap Procedure Tests Reasons Reactions Spectrum Disclosure
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