Your opinion and experience matters.
Too many times I have heard from clients, colleagues, and in online communities for autistic adults that their assessment for autism was actually traumatic. Not just ineffective. Not just "wish it could be better." Not "the diagnosis was hard to hear but it was accurate." Their assessment for autism was traumatic. Instead, it should be validating, complete, professional, and empowering.
I decided to write a guide to getting a better assessment, so that you know what to look for, what questions to ask the assessor (see the "?" symbol in each section), and where these good assessors can be found.
The key is finding an assessor who specializes in autism assessment for your age and gender (including your assigned gender at birth, your gender identity, and gender expression). Look for an assessor who considers - and values - your internal experiences (not just your outward behavior) and who is open to your questions. And arguably the most important, you deserve someone who allows you to be you in the assessment. I'll talk about each of these things below.
Ok, so where do I start?
First, narrow your search by finding someone who specializes in autism assessment for the client's age group and gender.
There are actually 4 parts to that recommendation: 1) The provider should be an expert in assessment; 2) Autism assessment should be a major component of their job; 3) You want an assessor who has experience in assessing clients in your age range, and 4) All aspects of your gender are very important. I will look at each of these factors in more depth.
1) What does it mean to be an "expert" in autism assessment? The clinician should have formal training and supervision in assessing autistic clients. Attending a couple seminars is not sufficient. The assessor should be able to tell you what training they have received, whether they were supervised (which means their work was reviewed by another assessor who is an expert), and whether they keep up with current research in autism.
"?" Ask a potential assessor: "Can you tell me about your training and experience in assessing autism? Have you been formally supervised in autism assessment? Do you keep up with current research in autism assessment?" The assessor should answer these questions willingly (even happily!) and be able to provide examples.
2) Autism assessment should be a major part of the clinician's job. If you needed a new roof, you would hire a roofing company, not a plumber who "sometimes does roofing." Same with assessment for autism. Clinicians do many things: assessment, therapy, teaching, research, writing, etc. You want a clinician who spends the majority of their time doing assessment, and the majority of their assessments should include autism.
"?" Ask a potential assessor: "How often do you assess for autism? About what percentage of your time is spent assessing for autism?" In my opinion, you will get the best results if at least 50% of their time is spent conducting assessments, and at least 50% of the assessments that they do should include questions of autism.
3) You want an assessor who has experience in assessing clients in your age range. Assessing a 2 year old child is different from assessing an 80 year old adult. For one, it requires different tests. Clients of different ages also have different needs, experiences, and goals. A child or teen may need help navigating the school district system. A young adult may be entering college or want to move out and live independently. An adult may have concerns with work. Clients of any age may want to apply for Social Security or a Regional Center, or have questions about how to improve their social relationships.
"?" Ask a potential assessor: "How often do you assess clients my age?" In my opinion, you will get the best results if the assessor frequently works with clients who are in your age range. I consider there to be three main age ranges that are grouped together because they have similar developmental needs: elementary school and younger, middle school and teens, and adults. If they say that they only assess clients in your age range infrequently, then it may be best to find a different assessor.
4) All aspects of your gender are very important. Assessing a male is different from a female. Why? Because many current tests are normed or developed on males, so we miss many girls and women because of test bias. Girls and women have different experiences, behavior, and characteristics that are not captured well with many current tests, so they go longer before being accurately diagnosed. Girls and women can then be told they "can't be autistic," simply because they don't "fit" the typical (male-centered) definition of autism. This is an inaccurate understanding of autism, and we now know that autism can be expressed in many ways.
I stated "all aspects of your gender" because gender is complex and is not just about what gender you were assigned at birth. It is also about your gender identity and how you express your gender to yourself and the outside world. More autistic people (compared to the general population) experience gender in ways other than the gender they were assigned at birth, such as fluidity in gender identity, non-binary gender identity, gender queer, trans, or gender questioning. And these are of course separate from sexual orientation. Your assessor should be aware of these considerations and comfortable discussing them with you, if you wish.
"?" Ask a potential assessor: "Are you experienced in assessing autism in girls and women? Are you experienced in working with individuals who are gender non-conforming (or gender queer, or trans, or questioning their gender identity, etc.)?" In my opinion, you will receive a better assessment if the evaluator can answer "yes" to these questions, even if you are male. A good assessor is aware of test limitations that may - or may not - impact you, so that you get the best assessment possible.
Then, find an assessor who considers - and values - your internal experiences and who is open to your questions.
The assessor works for you. You are the customer, the client, the one paying the bill. While you are not paying for a particular diagnosis, you are paying for their time, expertise, and a solid assessment. You deserve to be able to ask questions - as many as you want. If a potential assessor acts annoyed, rushed, or doesn't listen to you, find another assessor. Yes, additional questions may mean scheduling (and paying for) another session so that the assessor can focus on your question and give you the time needed to provide complete answers, but this should be offered and you should feel like a priority. Your assessment report should be in understandable language. You should never feel like your questions are dumb or irrelevant, or a waste of the evaluator's time.
Likewise, the assessor should ask you many questions during the evaluation about your internal experiences, not just how you act, what you did, or your skills. Many adults (and teens and kids too) can "mask" or "blend in" to situations at school, work, parties, or in relationships, so their outward behavior may appear to be completely effortless. They can be skilled at "putting on their social hat" and blending in. But many clients tell me that inside, they may be overwhelmed, stressed, anxious, panicked, confused, exhausted, bored, in actual physical pain, and even traumatized - or all the above. So if the assessor does not ask you about your internal experiences, you may hear, "but you don't look autistic, so you don't qualify for an autism diagnosis." This is not only infuriating, it's inaccurate, dismissive, and possibly even unethical.
"?" Ask a potential assessor: "Do you ask clients about their behavior and their internal experiences? Or do you base diagnosis just on how people act and behave? Do you ask how things were for me before I worked hard to learn how to 'mask' my difficulties?" If they seem confused by those questions, chances are they may not consider how you experience the world and your own self. You deserve better.
Lastly and arguably most important, find an assessor who encourages you to be you.
If you can't be yourself in the assessment, it will be harder for the evaluator to do a good job evaluating you. If you feel like you have to be "on your best behavior" or "follow all the social rules" or you are telling yourself, "I can't stim in the meeting," then the assessor has not done a good job encouraging you to be yourself. Even if you do want to "follow the social rules," for example, it is ok (and even encouraged) to tell the assessor, "This is hard for me," or "I usually don't make much eye contact with new people," or "I had a panic attack this morning before the appointment." I encourage people to tell me how the appointment is going and if they need a break. That can open up a conversation about what helps you to feel calmer after a stressful day, your interests, and how you recharge your batteries after work or school.
"?" Ask a potential assessor: "Is it ok if (fill in the blank)?" For example, "Is it ok if I don't make eye contact? It helps me to process what I'm hearing," or "Can we take breaks? Long meetings are hard for me," or "I rock (or move or pace) sometimes, is that ok?" The answer should always be "yes" to any reasonable request and you should feel welcome to be yourself. This will ensure you get the most accurate assessment, and makes the process a lot more enjoyable.
But WHERE are these assessors?
There are several ways to find a good assessor for autism. Try any or all of these resources and don't give up. You deserve an assessor who will work with you and for you.
- Ask your insurance for a list of assessors on your panel who can diagnose autism.
- Ask your physician, psychiatrist, psychologist, or counselor for a recommendation.
- Look on www.PsychologyToday.com and filter results by location, age of client, "autism," and "assessment," "testing," or "evaluation."
- Your local university or college will have a department or an individual who supports students with identified needs. Ask if they provide assessment or have recommendations. For example, our local community college has the Disabled Students Programs and Services Department.
- Some areas have universities or other research organizations that either conduct assessment or can provide recommendations, such as UCLA and Stanford University in California, Children's Hospital in Denver Colorado, or the University of North Carolina at Chapel Hill.
- Each state has a Regional Center (sometimes called a Center for Individuals with Developmental Disabilities, or a similar name) that conducts assessments for some individuals, or may have referrals. In our area, it is called Tri-Counties Regional Center.
- Call local counselors, psychologists, psychiatrists, speech-language pathologists, or occupational therapists that specialize in working with autistic clients and ask for assessor recommendations.
- Call your local school district and ask for assessors in the community they can recommend.
- Call a local attorney who specializes in social security, regional center appeals, special education, or advocacy for autistic individuals and ask for recommendations.
- Contact your County Behavioral Health, County Mental Health, or County Social Services Department and ask if you are eligible for their assessment services or ask for referrals.
- Contact local organizations that work with autistic individuals and ask to talk to a director or manager to see if they know of local assessors. Here locally we have the Central Coast Autism Spectrum Center that has a list of providers.
- Google "diagnostic assessment for autism" in your area. If the assessor has a website, it should come up.
- Facebook has several groups by and for autistic individuals. Members may have recommendations.
- Ask friends and family if they can help with the search.
Finally, it is ok to shop around. Sometimes you get lucky and the first hat or pair of shoes you try on or the first car you test drive is the right fit. But for most people, it takes research, trial and error, and many "test drives." So call as many assessors as it takes to find a good fit for you. I always tell callers about their other options - other assessors in the area, the school district, regional center, county services - so that they can make the right decision for themselves. Be wary of someone who is working too hard to "sell you" on their services, without telling you about other options. You have choices.
You deserve an assessment that is complete, professional, ethical - and validating. Maybe the diagnosis will be exactly what you thought. Maybe it will include other things you hadn't considered. Or maybe it will include none of the things you expected. No matter the outcome, you should feel like the assessor listened to you, respected you, answered your questions, and explained their thinking.
I say to every client, "Let me know if you have any questions!" I'm happy to answer any that you have. Email me with yours and I will do my best to answer them!
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