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.