Adults Diagnosis: Pros and Cons

While some Autistics are diagnosed from a young age, some go through their entire childhood, adolescence, and even a significant part of their adult life not knowing they’re Autistic. Getting an official diagnosis an adult is extremely difficult. While most members of Autistic Adults NYC are formally diagnosed, many of our members don't have an official diagnosis.

Many people outside of the Autistic community question why someone would "self-diagnose" themselves with Autism. Discovering you're Autistic is relieving for people who have been without answers to something extremely life-altering and, for many, fundamental to who they are as a person. Additionally, getting a formal diagnosis can be near-impossible or have negative consequences for many adults.

If you’re going questioning getting a diagnosis, here’s some things to consider -

Pros:

1. Getting accommodations.
   Having an official diagnosis can allow you to get accommodations at work or school, like extended time for testing, visual or written supports, a note taker, etc. Additionally, if you’re being discriminated against at work for disability related reasons, a formal diagnosis allows you to protect yourself, report your employer and take legal action. More information about accommodations and discrimination can be found in our “Self-Advocate Guide".

2. Getting answers.
   Many of the professionals who provide you with a diagnosis will give you a written and verbal report after you complete the process. Having all this information about yourself and how being on the spectrum affects you can be informative and useful. Additionally, you may be referred to different therapists and providers who work specifically with Autistic adults and addressing their needs.

3. Getting relief.
   For many, it's relieving to have a professional diagnosis of autism. Many of us suffer impostor syndrome, especially after being told our entire lives that we’re "lazy", "a little awkward", or "difficult", rather than having their disability affirmed and accommodated for. Getting a diagnosis can provide you with relief and affirmation, and additionally provide concrete evidence to others of your specific needs.

4. Access to services.

   Many organizations or government assistance programs, such as vocational rehabilitation, require an official diagnosis to receive services.

Cons:

1. Getting a diagnosis can be extremely time-consuming and expensive.
   It's not uncommon to have to spend thousands of dollars to get a diagnosis. Many places don't accept insurance, and even with insurance, many plans don't cover it. Additionally, it can take several months or years to get your first appointment as some places have a long waiting list. Many places require a referral as well. It might take several appointments with different professionals, including with a therapist/doctor to get a referral, intake with the center doing diagnosis, several testing appointments, and an appointment to get your results.

2. People assigned female at birth (AFAB) and people of color (POC) might have varying results.
   For years, autism was though of as being a condition only cis boys, typically cis white boys, could have. AFAB and POC individuals were often overlooked and misdiagnosed by professionals. While times are changing, the tests sometimes fail to serve Autistic girls and women, and might have different results due to a racially biased provider. Many neurotypical providers complain about Autistics possibly mis-diagnosing themselves, but don't consider the impact of biased "professionals" mis-diagnosing or under-diagnosing autism for years.

3. An official diagnosis can lead to discrimination.
   Keep in mind that a diagnosis is a medical document, and therefore protected by HIPAA. Your employer, family, the government, etc. will not know of your diagnosis unless you disclose to them. However, there are some unique situations in which a diagnosis of autism may lead to discrimination - ​It might affect judicial proceedings (including getting custody of a child), prevent you from doing military service, affect your standing on an organ transplant list, open you up to involuntary commitment or placement into a guardianship, affect immigration to certain countries, and affect your ability to medically transition genders. These cons are very situation specific, so before getting a diagnosis, here’s a great article to read more about possible negatives that may be relevant to your unique situation.

The formal diagnosis process can be lengthy, costly, and emotionally straining. It may be helpful to do some psychometric tests to decide if you want to proceed with the process. Embrace Autism has a range of online tests you can do in your own time.

Reading

• I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults

• Seeking an Autism Diagnosis? Here’s Why You Might Want to Rethink That.

Diagnosis Options in the NYC Area

​The two most common pathways to get formally diagnosed are:

1. Autism assessment - typically consists of an intake session to get your personal history and tests to determine if the diagnostic criteria are met for Autism Spectrum Disorder under DSM-5. Some places will use ADOS-2 and ADI-R as the gold standard of testing, however these may not be as effective for diagnosing adults, women, or people of color. Other tests may be applied to account for behaviors such as masking, where an Autistic person may suppress aspects of their personality or behavior to blend in with others.

2. Full neuropsychological test - a lengthier and usually more expensive series of tests which may include the assessment of other conditions or mental illnesses, testing other areas such as cognitive function, verbal skills, and motor skills.

Below are some providers who conduct autism assessments or neuropsychological testing, either in New York or virtually, recommended by users in the AutismInWomen subreddit or by members of our group. We do not endorse any of these sites, please check them out and decide whether or not they might be useful to you!

Autism assessments:

• Embrace Autism | ~$1000 out-of-network

• Lauren Megrew | $900 out-of-network

• Sachs Center | $695 out-of-network

• Grasp | $600 or $1800 for full neuropsychological testing out-of-network | over a year waitlist

• ​Wilderwood Equine Therapy and Rescue | $500 not accepting insurance

• Marcia Eckherd | in-network with Anthem, confirm for other providers | over a year waitlist

• Tap Root Therapy | $450, sliding scale available

• RMH Therapy | In-Network with many plans. 

Neuropsychological testing:

• Dr Zonya Mitchell | $4500 out-of-network

• Child Mind Institute | Even though "child" is in their name, they do work with young adults. Out-of-network.

There are also NYC based clinics that may offer services under certain conditions: 

• New York Presbyterian | requires referral from a doctor or qualified clinician

• Kelberman Center | requires referral from a doctor or qualified clinician

• YAI | on a needs basis

Our full list of resources can be found here.

If you have more questions about the diagnosis process, please ask in our Discord server! Many members are currently going through the process or are recently diagnosed, and would love to help.

Stories

I have been in and out of therapy since the age of 16. Anxiety, depression, and social anxiety were the terms thrown around in my sessions. It took 7 years for a new therapist to finally mention the term "Autism" to me. As a POC woman, I later learned that my community is typically under-diagnosed or misdiagnosed, and my story is not unique. My diagnosis process occurred over the course of 3 months, from my therapist referring me to a center, going through several intake, testing, and interview appointments, and finally getting the diagnosis. In the end it cost me around $3600 (provider was out of network). It's hard for me to recommend getting a diagnosis because of how inaccessible and stressful the whole process is. For me personally, I feel like the process provided me with a lot of answers and insight into myself, and receiving the official ​diagnosis was extremely relieving and provided a sense of closure.​
- Nicole (Brooklyn, NY)

I was diagnosed at the age of 32, when I moved to New York City, which coincided with multiple aspects of my life falling apart. I’d been treated for depression on and off since I was 12 and tried my typical coping strategies, but when they didn’t work, I kept trying more strategies, like throwing spaghetti at the wall. I realized that most of my coping mechanisms were very autistic and I’ve been using them my entire life. I researched it more and learned how the symptoms of autistic burnout and depression almost completely overlap and how the stories behind women getting diagnosed as adults were remarkably familiar.

​I got my diagnosis a few months later and joined this community, where I found it so effortless to communicate with people here, like there wasn’t another language I had to decode. My diagnosis helped me relearn who I am, forgive myself for things I blamed myself for and embrace aspects of my personality that I subconsciously hid from others. While it would’ve been nice to have my diagnosis earlier, I’d agree with the idiom, it’s better late than never.
- Jenny (Brooklyn, NY)

Have a story you want to share or know of any other resources? Reach out to info@autisticadultsnyc.org

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