How to find Autism Diagnosis

AS an Older Adult

One of the perpetual questions asked on the pages and boards I participate in is “how do I find diagnosis”? Its not as easy as picking up the phone and making an appointment!

Self discovery is well accepted in autism forums and groups because most of us understand how difficult it is to find competent professional diagnosis today. Most professionals are not familiar with today’s scientific understanding of autism. The majority of psychiatrists and psychologists, neurologists and neuro psychologists have not kept themselves up to date on autism as we know it today. In truth, most are very inexperienced with autism and if they have a general practice that covers all of the population, it is likely that they will only run into autism as 2 or 3 percent of their clients and likely that those autistic individuals will not be recognized unless they come with previous diagnosis.

The first thing we need to look for is a professional who is experienced with autism as a specialty. The second criteria is that they be experienced working with adults. Let me tell you that those folks are extremely rare today.
My first attempt at diagnosis ended up badly, I had asked the staff in the neuro psychologists appointment desk if Dr was familiar with autism and had worked with older adult women. “of course, he has years of experience”. BUT
When it came time for my diagnosis summary the Dr told me he had never diagnosed a single person with autism “it just doesn’t come into it”.
He ridiculed me and told me autistic people never marry, never work at a job, never have families or raise children. His idea of autism was rooted in his early education in the 1980s and he had not kept up with today’s understanding of what autism “is”. He gave me 5 other serious diagnoses to explain what he saw in me instead. It was emotionally devastating., but eventually I found the diagnosis summary and test results very useful in spite of the diagnoses he saddled me with. The tests were competent and accurate but his interpretation of them was from a different perspective with little familiarity of autism itself.

When I took the diagnosis summary and test results from that experience to the autism specialist I finally found almost 2 years later, he was able to point out that my test results showed my uneven neurological development perfectly. The first doctor simply had no idea of what to look for from the standpoint of today’s scientific understanding.

If you are looking for diagnosis in order to apply for government support (I’m speaking of the USA here, in other countries things may vary ) check with your state autism council to see what professionals are allowed to make diagnosis in order for you to qualify for state programs. Many states allow psychiatrists, psychologists, neuropsychologists to diagnose officially, others also allow social workers, neurologists, and others to do the examinations and diagnosis process. Some require only psychiatrist exams. Make sure you find out what your state accepts before searching for the professional who will do your exam.

Usually diagnosis will be billed for insurance as ” comprehensive psychological evaluation” and most insurance companies accept it as such. Check with your own insurance to see if ” comprehensive psychological evaluation” is covered. If the doctor you choose is “out of network” see if the insurance company will allow you to pay the bill yourself and submit it for reimbursement. The insurance company may be able to recommend an “in system” professional as well.

Do talk to the doctor who will be performing the diagnosis personally if at all possible, and ask them directly how many people they have diagnosed with autism. If I had done this, I would not have gone through the trauma of my first attempt and the ridicule and shaming that attended that experience. If the doctor you choose refuses to phone you back before you make the assessment appointment, they may be more interested in collecting their fees than they are in working with people to help them solve their problems.

Many people search long and hard using the internet, phone calls, emails, over a long period of time to find somebody who is competent to diagnose them.
One strategy that finally proved helpful for me was to contact autism societies of all sorts in my state and ask for information about finding diagnosis as an adult. Parents of autistic kids (in parenting groups!) may have got diagnosis themselves and may be willing to share the contact info for the person they saw. People who work in the office of autism support groups may be autistic or know somebody who got diagnosis as an adult and be willing to help you contact the diagnosing professional or give info that sets you on the right path. I contacted one of the autism societies in my home state and the person who answered the phone has a late adult diagnosis. She shared with me the contact info of the doctor who did her exam and gave her diagnosis. It turns out she was his first adult diagnosis as a young man with a growing practice. I turned out to be his last, so many years later.
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Expect to spend a lot of time, likely also spend a lot of money-the professional you find may be far enough away that you must travel and even spend a night or two in a hotel or motel, etc to get through the testing process. Expect to have a long “wait time” before your appointment. Some professional offices I contacted had waiting lists of up to 3 years. There is much demand for diagnostic services, but few competent professionals available to fill that demand!
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Some people have found diagnosis through teaching hospitals Psych. departments. Schools such as these often offer services by students who are under the guidance and support of professor/doctors . Many times fees are less than what is standard in private practices.

The struggle to find competent diagnosis in not only the USA but in other countries as well is one reason self recognition is so well accepted in groups of all sorts where Autistic folks gather to support each other.


If you know anybody who is just starting out with education, thinking of medicine and looking for a profession, please suggest that the demand for adult diagnosis is a specialty that is desperately needed. A person could live anywhere in the USA and be almost guaranteed of a living for life. No” on calls”, no weekends…

Once you have that precious appointment, you will want to know how things proceed, what the tests and interviews consist of, what they are looking for. Another post coming soon with info about the actual diagnosis process.



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