While many people with autism receive their diagnosis in childhood, others make it to adulthood before recognizing signs and receiving a formal diagnosis. If you are an adult who suspects you may be on the autism spectrum, we’ve prepared this list of questions about pursuing an autism diagnosis.
What are some signs that I might be on the autism spectrum?
You may have noticed that your learning style is a bit different from your friends and co-workers. Maybe you have great attention to detail, an amazing memory for facts, and prefer to strictly adhere to rules and directions. Do you find it difficult to think abstractly and prefer directions to be concrete? Do you over focus on details and miss “the big picture”? Do you have problems with organization; figuring out the required steps, planning, and completing a task; time management; or “reading” and interpreting non-verbal communication? (This is not an exhaustive list.) Several websites offer “self-diagnosis” tests or quizzes for autism, but these are not definitive or even approved by professionals who understand Autism Spectrum Disorder. Reading information about autism and the experiences of people who were diagnosed as adults can be more helpful. This information can guide you into a discussion with your doctor, so you can get therapeutic support.
Why should I get a formal diagnosis?
Receiving a formal medical diagnosis from a licensed medical doctor or licensed psychologist will be necessary to access certain services. Some of these services may include:
- Vocational Rehabilitation services for job-related challenges
- Therapies including applied behavior analysis (ABA), behavioral, cognitive, psychological, speech, occupational, and physical therapy
- Some forms of transportation services
- Entitlement services under the new 1915(i) or “home and community” based services designed to help you live successfully independently.
Having a diagnosis also gives you:
- A greater understanding of yourself and the world around you
- The ability to play to your strengths and develop strategies for areas you find challenging
- Information to help you find the type of support that may better fit your needs
- A better perspective on your childhood
Where should I start if I want to get a diagnosis?
The answer to this may differ based on your current insurance status; see bullets below. Regardless, the place to start would be with your Primary Care Physician, who can assess for possible underlying health conditions, or your mental health provider if you have one. Ask them whether they can assist you in getting a referral or whether they can recommend a psychologist or psychiatrist who offers autism evaluations for adults. You will then need to contact that provider and ask: “Do you do autism evaluations for an adult who thinks they might be autistic?”
- Private Insurance: If you have your own insurance, you need to get a list of your providers and then see who does diagnostic assessments. Look for these words on their website: psychological testing and evaluation, psychological assessment, autism evaluation, Autism Spectrum Disorder evaluation, or ASD evaluation. Most will say who they test: child, adolescent, adult. If the site isn’t specific, you will have to call and ask. (For people with complex diagnostic histories, a more comprehensive evaluation may be recommended.)
- Medicaid: If you receive Medicaid, check the list of insurance companies that the provider accepts; if they accept Medicaid, it will be listed there. The MCO may have a list, too. Call the 1-800 number for the MCO and say, “I need help finding a Medicaid provider who does psychological testing for autism.” They may instruct you to the provider search tool online, but you can tell them, “That is difficult to navigate. Can you use it and tell me or send me a few options?”
- Self-pay: Check with the provider to see whether they offer a “sliding scale” option. This may require you to call and talk to the Office Manager or Billing Coordinator. UNC TEACCH is an affordable option but may have a waitlist.
What do I say when I ask for an evaluation?
“Do you provide autism evaluations for an adult who thinks they might be autistic?”
If they do provide evaluations, here are some other questions you may want to ask:
- “How many sessions will be required?”
- “How long does it take?”
- “How much does it cost?”
- “What do I need to bring to the testing appointment?”
I don’t have health insurance. Can I get a diagnosis for free?
There are mental health providers that accept state funding for people who are uninsured or don’t have Medicaid. The easiest way to get connected is to call the Managed Care Organization for your region and ask for an appointment with a state-funded mental health provider. At that appointment, they may begin to gather info to give a diagnosis and see what level of treatment is needed.
When I go to be tested, what do I need to bring?
You will need to ask the professional who will be doing the evaluation this question. Most likely they will want to see any pertinent documentation that you may have, such as:
- Any school records that show possible behavior or academic challenges, or special accommodations.
- If you attended a post-secondary school, did you use student disabilities services? If so, you could bring documentation about that.
- Are you currently receiving any services from a psychologist or therapist? If so, you may want to give the evaluator consent to speak with them. You could also ask them to provide some observations in writing that could be passed along to the evaluator.
- Were you ever diagnosed with a mental health or behavior disorder, or an intellectual disability, as a child? If so, having the documentation from that could be helpful for your current provider.
What will they do to test me?
We would advise that you ask providers this question directly when inquiring about the assessment.
The provider may ask lots of questions about the present and the past. Some of the questions about the past may be very specific and hard to remember. This is ok. They may ask you questions in an interview format and either on pencil/paper or computer. They may have you perform various tasks and activities as part of the evaluation. Some of the questions may seem unrelated to autism but are important to ask. Providers may need to rule out other diagnoses, identify if an alternate diagnosis is more appropriate, or if someone is displaying symptoms of multiple diagnoses.
How long will it take to get my results?
Typically, this can take several weeks to a couple of months. Ask the provider this question.
If I do get a diagnosis, what do I do then?
Explore how your diagnosis affects you. What are your strengths and your challenges? Some of your strengths and challenges may be outlined in your evaluation report. Knowing this will provide you with the insight you need to develop goals, address challenges more effectively, and most importantly, develop a deeper understanding of your strengths versus weaknesses.
See “What kind of therapies or treatments are available” below to explore additional therapies that may be helpful to you.
If the diagnostician says I don’t have autism and I disagree, what should I do?
If you feel the diagnostician made a mistake, you can talk with them about the results to understand their clinical opinion. It is possible, as an adult, that you have developed tremendous skills to “mask” symptoms or that you have additional diagnoses that seem primary and may overshadow your autism symptoms. A diagnostic evaluation is a snapshot in time of what that specific psychologist is observing and understanding about you, and it’s possible they missed something. Some people pursue a second opinion, which can be done six months to one year after the first evaluation. (Usually, if you try any sooner, insurance will not pay for it.)
What kind of therapies or treatments are available if I do get a diagnosis?
- Dialectical Behavior Therapy (also known as DBT)
- Cognitive Behavioral Therapy (CBT)
- Applied Behavior Analysis (ABA)
- Specific support for challenges you may be facing (anxiety, job difficulties, social isolation, depression, family relationships, etc.)
- Social workers can be a wonderful affordable option; they can also connect you to resources
- Psychologist: general counseling or group therapy
For further support or assistance, please call on our Autism Resource Specialists by calling 1-800-442-2762 and pressing 3 or by filling out our online form here. You may also find our ASNC Resources for Adults page helpful.Tags: adult with autism, ASNC, Asperger's Syndrome, autism, autism advocacy, autism awareness, autism diagnosis, autism health care, autism resources, Autism spectrum, Autism Spectrum Disorder, autism treatment, autistic adult, Developmental disability