In this post we will discuss the issues and techniques surrounding diagnosis of Asperger’s Syndrome. The issue has become a bit of a minefield with many general practitioners refusing to allow people the opportunity for an official diagnosis.
Many people have already taken the free online AQ Test, which will give people the opportunity to get an initial insight into the degree of their autistic traits without the hassle or expense of going for a medical consultation. While it gives a good general indication where one is on the autism spectrum, it is not a substitute for an official diagnosis.
We have written this post to try and represent diagnosis perspectives from a UK and US angle however we are aware that the advice we give may differ between countries (and states) so you will need to do your own research in your place of living to determine the best course of action.
Why get an official diagnosis
There are many benefits to getting an official diagnosis, which many people don’t realize.
With adults, an official diagnosis is essential if you intend to claim benefits. Supplemental social security income or disability insurance both require an official diagnosis. Here are some tips for people in the UK on how to go about claiming disability allowance
As well as benefits, adults with Autism are also entitled to disability rights. This enable them the right to disclose and request accommodations at their place of work.
For toddlers and children, the earlier they are diagnosed the sooner services can be provided. Occupational Therapy and Applied Behavioral Analysis are just some of the many useful resources out there for kids that can help them.
How to get officially diagnosed with Aspergers
It wasn’t until 1994 that Asperger’s could officially be diagnosed. Usually the best starting point in the process of diagnosis will be your GP (Doctor). Depending on your country of residence, they will then refer you to one of the following:
- Neuropsychologist (PhD)
- Psychiatrist (MD)
- Social worker with AS experience and a MSW degree
- Psychologist with AS experience and a Masters degree
- Scientific Study being done at a university
If your GP is not willing to refer you directly you may also want to consider going direct to the specialist.
In The US
For help in your state click this link http://grasp.org/page/statebystate-help.
Also, you can call your insurance provider under behavioral health needs.
In the UK
You can check out this link to find a Neuropsychologist or psychiatrist in your area – http://www.bps.org.uk/psychology-public/find-psychologist/find-psychologist
Getting a free diagnosis
We have observed from feedback from people who taken the AQ Test that GP’s are not always willing to provide a free diagnosis. We wanted to offer a few alternatives that you may find helpful.
There are many scientific studies being done at various colleges or medical centers about Asperger’s. Many of the studies will even pay you for your time and you get free MRI and PET scans. You have the right to request the findings once the study is done. There is a list at the Global and Regional Asperger Syndrome Partnership (GRASP) site www.GRASP.org, which is in the US. Click the “Help &Resources” tab and then scroll down to the Diagnostics sources link. There are a few going on in the state of New York.
If you have already taken the AQ test on our website, you may want to check out a number of similar free online tests:
Broad Autism Phenotype Test – This test will measure the mild autistic traits that are present in the person taking the test
Aspie Quiz - This is a slight variation of the AQ Test which will compare the Autistic traits against Neuro Typical ( non autistic) traits.
Mind in the Eyes Test – People with ASD often do not interpret facial expressions easily, this test is designed to evaluate your capacity to read facial expressions.
Before the appointment with your GP
Unfortunately, many doctors are still not knowledgeable or up-to-date with Asperger’s Syndrome. So do the homework for them. When you go to speak to your doctor, bring a list of your concerns with you. This will help the doctor and save everyone time. You can also print out a list of Asperger’s characteristics in order for the doctor to compare your traits to the characteristics list. This way if your GP is not well-informed, you can be helping educate him, which may help him refer other patients in the future.
(If the child is a resident of the USA and is under the age of three then call or email www.birth23.org. Evaluations done before the child’s third birthday are FREE. Do not delay! Trust your gut instinct and get services for your child as soon as possible. It really does help.)
For the diagnosis of children you may also want to refer to Leslie Burby’s book Early Signs of Autism – Diagnosis and Treatment Options
The testing process
Children are usually tested using the M-CHAT (Modified Checklist for Autism in Toddlers). It consists of interviewing parents and evaluating the child. Parents should be prepared for paperwork and checklists. They will ask when your child achieved milestones (ie. How old was your child when they started walking?)
For adults, questions of your childhood behaviors and your current behavior will be taken into account. You will be asked questions and might need to consult your parents or siblings about your childhood.
Dealing with the diagnosis
Everybody is different when it comes to responding to the diagnosis that they have Aspergers or Autism.
For some, it is a relief because it helps you understand why you are the way you are. You have a reference point and you can understand that there are many people around the world with the same condition.
But for many people, accepting the diagnosis is not easy; it can bring memories from the past about occasions when the symptoms were most present. Perhaps from social events, childhood or school.
It’s easy to think of ourselves as different and inferior. We don’t feel good enough and sometimes we suffer from low self esteem.
One of the most important things to remember during the period following diagnosis, is that Aspergers can be a gift as well as a curse. Yes its true, sometimes we struggle with life and social skills that are easy for many Neurotypical (NT) individuals. However people with Aspergers Syndrome have many different abilities and qualities. The ability to see and understand the world in different ways with a different perception can add so many gifts to the world.
If you haven’t seen the movie about Temple Grandins’ struggle with autism and her subsequent achievements in life, we recommend you do. Not only did Temple find a way to overcome the Emotional distress, but she also gained a PHD in animal science and became an internationally recognized speaker in the Autistic community. Temple is truly an example to us all.
Without the qualities of Asperger’s Syndrome, we wouldn’t have the pioneering theory of relativity that was developed by Albert Einstein, or the widespread adoption of the Windows operating system when Bill Gates created Microsoft. It’s important to find your contribution to the world, however big or small.
Because the whole issue around diagnosis differs from country to country ( and state to state), we would love to hear your experiences. Many people often ask about the possibility of getting a free diagnosis, so if you have found a way to get one, please leave a comment below.