Autism diagnosis process

What happens during the Autism assessment?


People seeking diagnosis and anxiously waiting for that far off appointment often wonder what is going to happen? What is the procedure that is followed? How are tests performed? What are they looking for?


Autism diagnosis is based on traits that have been observed since its discovery, and the testing procedure, standard measures of performance and understanding are based on behavior rather than neurological testing. That seems odd, doesn’t it, considering that we know autism is based in neurological function and sensory processing struggles due to uneven neurological development that happens before we are even born. Some autistic like traits may be observed in individuals who have suffered trauma or have been in severe accidents, but these symptoms are due to “something else”. ( although autistic people can also suffer trauma and severe accidents).
So criteria was set out for diagnosis and the guidelines for diagnosing autism which have been the standard for many years are laid out in the Diagnostic and Statistical Manual of Mental Disorders (now version 5) published by the American Psychiatric Association. The tools used and the standards are still based in discoveries and assumptions of early days in science’s understanding of ASD. You can find the entire section about autism diagnosis and the actual wording of the whole Autism description and testing online. Try using ” DSM5 American Psychiatric Autism” as a search phrase.

Behaviors are observed, tested, and categorized/rated. There are several categories of behaviors that are looked for and those being tested must meet criteria from each category in order to be designated as autistic.

To be diagnosed as autistic we must have struggles with communication, Social struggles, and rigid thinking with repetitive behaviors, (sometimes called the “diagnostic triad” of autism”
and today many diagnosing professionals also look for sensory processing struggles.

Most diagnostic processes begin with an interview that determines if we are candidates for autism testing. Most people receive “Comprehensive psychiatric evaluation” Tests may also include neurological testing, special tests designed to indicate possible mental illnesses (many individuals also receive other diagnoses or are already diagnosed with other conditions)
Tests are in the form of booklets/ paper, some are spoken questions and answers, some may be administered online using computer prompts and fill in style responses. There are basic questions about health and history, where you will be asked about your childhood and any early traits of autism you may have shown while growing up. Some facilities/ testing procedures ask for input of somebody who has known you for a long time , parents give input for small children, with older adults, their parents may have passed, they may not have a spouse, etc. or anybody who can speak of long time behaviors. this is not a rigid requirement in order to obtain diagnosis but is considered helpful to know. Some testing is done with tabletop manipulation of pieces to duplicate a shown image, some testing may require us to draw and image we saw previously, or to indicate which image most closely matches the one we saw.
I found the testing fascinating and was very interested in trying to figure out what the tests were trying to discover. We may be asked to draw a face, clock face, any other thing, we may be asked to play “word games” or to do things with numbers.
Don’t worry if you do not do well in some sections of testing, failure is just as informative as wild success, because it is all meant to understand how we think, how we process information or sensory input. Tests reveal strengths and weaknesses and those who are autistic frequently show extreme performance or extreme under performance in various places of the tests because of our uneven neurological development. The test is not “pass fail” but designed to show what our neurology excels with and what are true struggles for us. There is no shame in struggling with any test section or request to perform. I gave up completely on a couple of them, my brain simply refused to “go there” and what was asked of me was impossible for me to perform.
Thats OK, this is exactly what testing is supposed to reveal!

Testing and interviews usually last from 2 to 8 hours, and we may be asked to come in for a preliminary appointment interview and to come back for a diagnosis summary.
If possible, ask for a written diagnosis summary with test results. These can come in so handy for self understanding and for making self accommodations. Sometimes printed results take time to assemble and you may have to be patient or make inquiries at the office to make sure you get them, although in some cases, you are given these as part of the “follow up” appointment. Do not be afraid to ask for explanations or to ask questions.

If you are anxious before testing, or at any other time, do tell them, they will understand and try to help you get through it all.