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.
Tag: autism testing
How to Seek Diagnosis
Common question with multiple answers
It has been almost 2 years since my formal professional diagnosis. Since that time I have read countless blogs and participated in multiple forums for autistic people of all sorts.
One of the most commonly asked questions is “how do I seek diagnosis”?
Unfortunately, there are very few competent diagnosing professionals for adults with autism, or suspecting autism. Information about autism is being updated almost daily and many professionals fail to keep up with changing ideas and thoughts about autism.
It is still very common for an adult seeking diagnosis to be told it is impossible for them to be autistic because they are in a relationship,married, have children, make eye contact, hold a job, or live independently. Many diagnosing professionals believe that autistic people do none of those things.
Many adults seeking diagnosis are turned away with the diagnosing professional saying it is too late anyways, “you are already living your life and what good would it do to get diagnosis now”?? “there is nothing we can do for you now”
Those seeking diagnostic services as adults need to be aware that it is possible, even common to encounter rejection, mockery and ridicule, misdiagnosis, and misdirected “treatment” with both drugs and recommended “therapies”.
How do I find a competent diagnosing professional?
Here are a few strategies gleaned from much discussion with others over the period of time since I was finally able to obtain my own diagnosis.
Be prepared to travel long distances, pay out of pocket, and recognize that it may take a very long time.
Many insurance companies will not support “testing for autism” but will support psychological or neuro-psychological testing in general.
Check to see if your insurance covers psychological testing. Part of the testing process may be covered by insurance, medicare, or supplemental insurance, but it is likely to require co payment of some sort. If money is an issue (and for most people it is a big one!) check out the coverage you might have first. Ask if they will accept client (you) claim submission for out of pocket payments using “out of network” psychologists.
While you are talking to the Insurance company ask them if they can recommend psychologists or neuro- psychologists who accept their plans.
Do you know others in your area who have obtained diagnosis as an adult? Is there an autism group, support group, or other autism (therapy, social, etc) group in your area? You may find diagnosis by asking these groups for recommendations or referrals. Even if the group is for children or minors, many of those parents may also be autistic or have obtained diagnosis. Most will be glad to share the name of their diagnosing professional.
You may be told by insurance to visit your GP for a referral. Many GPs may know somebody in their professional circles or within the group they practice in. Many will not .
Finding diagnosis can be a struggle of its own, things are gradually getting better, but for most of us who missed diagnosis in the 80’s and earlier, we can expect to have to be persistent and diligent in our search and to rely on patience and self care to see us through.
If personal contacts do not bring forth names of professionals willing to work with you, you can ask in forums and pages on the internet.
There are lists in some internet groups depending on location, which have contact information for diagnosing professionals.
Cities with high population, teaching hospitals, and medical colleges will be more likely to contain a professional who is experienced in screening adults for autism.
There are individuals who are willing to do diagnosis today online or on the telephone using webcams and other technology. Covid has made this possible and can be a blessing for some, but be aware that if you are seeking disability or legal accommodations in the USA you will likely need to present documentation from a USA doctor and it will have to be part of your medical records.
Internet medicine and related practices is full of fraud and if you can not ascertain an established practice with a physical address, phone, email and other contact information, or if you can not find documentation from the state (Doctors and businesses must register and be certified or licensed by the states where they practice, and those documents are public record) then do not proceed!
Verify credentials and any internet information using at least 2 other sources. In eagerness for diagnosis, don’t be duped by slick imposters and tricksters.
Locating possible professionals is only the beginning!
Calling or emailing for information comes next.
1. Express interest in obtaining testing because you suspect you may be autistic.
2. Ask if the professional sees adults, older adults, women/or other descriptions of your self identity
3. Ask how many autistic diagnoses the professional has made. How many women, etc?
4. Depending on the answers, ask for the professional to phone you regarding your interest in being diagnosed. If the professional does not call you back and you are pressed to make an appointment, do not proceed.
5. When the professional phones you, ask the questions 1 through 3 in person, and see if you get the same answers.
Do you communicate easily with the professional? Do they answer your questions and ask questions of their own? Proceed to make an appointment to meet and talk in person about the diagnostic process.
Do you feel as if they are being abrupt, impatient, condescending, or are angry with your questions? Do they push off or put off your questions and prompt you to make an appointment for diagnosis rather than a pre- diagnosis meeting right away? Do not proceed if these warning signs are present.
Other questions to ask: How many tests have been performed and how many adult diagnoses given?
How many women, or other self descriptions have been diagnosed?
Do they give follow up support? If so, what sort of supports are offered? ( therapy, support groups, reference to others who might be able to help with specific needs?)
Discuss fees and if you decide to make an appointment to discuss diagnosis processes, be sure you understand how the paperwork and billing will be handled ahead of time, so there are no surprises.
Some doctors will refer you to their offices for this part, that is OK, Be aware of your insurance company’s needs regarding diagnostic assessment, etc… do you have to get the appointment pre-approved?
More discussion about finding diagnosis soon.
Note: This process can be very discouraging and frustrating, especially for those of us who have struggles using the phone, camera/video communications, or have anxiety. Self care is so important.
Be aware that finding proper diagnosis is not generally easy for most of us today. (autistic elders).
Things will take a lot of time and we may reach many dead ends or barriers, but we are not without alternatives in most cases.
OldLady With Autism 