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Adults seeking ASD diagnosis

With increasing public awareness and understanding of autism, it’s natural for many adults to discover they may fit the criteria for a diagnosis. For many of these adults newly interested in learning more, it can be difficult to identify the right next steps for their individual needs. This informational handout has been created to help people evaluate whether a formal autism evaluation is right for them. We’ve included guidance on the limitations of an official autism diagnosis, the situations in which an official diagnosis is important, the validity and impact of self-identification, and ways to get help without one.

Often people seek an autism evaluation in hopes that it will open the door to the support that they need. Unfortunately, many find that the official diagnosis did little to change their practical circumstances. Autism-specific services for adults are severely limited. And if people around you are intolerant of your differences and difficulties, they will not necessarily become more accommodating after an official diagnosis. For many, the best part of learning they’re autistic is understanding themselves better and finding a like-minded community. This can be pursued without a formal diagnosis.

Situations in which a formal diagnosis can be important include:  

  1. Accessing medically necessary therapies to address core challenges associated with ASD
    1. Services by a physician, including a psychiatrist, or a psychologist to diagnose and evaluate the presence of autism spectrum disorder for an adult are covered services under Medicaid and private insurance; 
    2. Managed Care Organizations (MCOs) are required to pay for these services under the Medicaid managed care contracts; and 
    3. The provision of these services for an adult falls under the Washington State and Federal Mental Health Parity act. 
  2. Eligibility for autism-specific support at your school, or autism employment initiatives at various companies or businesses.  
  3. Official confirmation of a formal diagnosis can provide the psychological comfort or safety necessary to overcome internalized stigma around embracing an autistic identity. 

Outside of the above situations, people often find that an autism evaluation is time-consuming without offering practical benefits. You may find it more helpful to pursue the following strategies:

  1. Finding therapists, doctors, employers, and others who respect your needs and preferences regardless of label. 
  2. Receiving evaluation from a non-autism-focused psychologist to test for cognitive strengths and challenges, learning disabilities, ADHD, and/or other co-occurring mental health conditions.
  3. Seeking services and accommodations based on an already established diagnosis, such as anxiety or ADHD
    1. See https://askjan.org/ for suggested accommodations.
  4. Connecting with other autistic people who will provide a supportive community.
  5. Encouraging supportive friends or loved ones to learn about autism.

We regret that resources for autistic adults are woefully limited. We will continue to speak up about the need for more and better services in the community for adults. Outside of that, there are other, more informal ways that you can find support. For instance, increasing your awareness and understanding of how you may relate to the autistic experience can be one helpful way to better manage your mental health and improve your ability to successfully navigate the world around you despite the unique challenges you may face. 

The autistic community is very accepting of self-identification, in large part because of the issues discussed here. They are likely to know of other strategies that may be helpful to you, and there are many different resources for connecting with this community, especially online. We’ve collected a couple links to informational resources available online that may provide more background and understanding for you or your loved ones:

  1. ASAN description of autism - https://autisticadvocacy.org/about-asan/about-autism/
  2. Neuroclastic description of autism - https://neuroclastic.com/2019/10/11/a-communaldefinition-of-autism/
  3. Taking Ownership of the Label - https://autcollab.org/2018/06/30/taking-ownership-of-the-label/ 

We also have available resources listed on the official Washington Autism Alliance website. Some of the Adult programs and resources for adults can be viewed here. We aim to continually update the available resources listed on our website, although sometimes the individual circumstances for each listed resource may unexpectedly change without our knowledge (i.e., providers may move away, they may not have any more availability to take on new patients, etc.). Additionally, the Washington Autism Alliance does not necessarily agree with all of the information or opinions shared in all available online resources. Please use independent judgment when determining whether the information is applicable and helpful to your experience and needs. We hope that these resources are helpful.

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