Adult Autism Diagnosis Tool Kit

Milestones provides consultation services to all family members, professionals, and self-advocates. Services include connecting participants to resources and providing general information and assistance. We also offer a free autism helpdesk. If you have any questions or concerns, please contact us at 216.464.7600 or info@milestones.org.

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The views expressed in this publication are those of the authors, and may not reflect the official position of Milestones Autism Resources. The publication is designed to provide guidance concerning the subject matter covered. It is published with the understanding that Milestones Autism Resources is not engaged in the rendering of legal, medical, or professional services. If legal, medical, or other expert advice or assistance is required, the services of a competent professional should be sought.

Why Adults Might Seek an Autism Diagnosis

There has been a significant increase in adults seeking an autism diagnosis in the last few years. This increase is a result of multiple factors such as better awareness and acceptance of what autism is, including how broad the spectrum truly is. Medical providers have also gotten better at identifying people of color and females, who were largely underrepresented in the autism community. Lastly, with the changes to the diagnostic criteria, more individuals who are labeled "mild" now qualify for a formal diagnosis. This has created a surge in adults questioning whether they should pursue a formal assessment and diagnosis for Autism Spectrum Disorder.

Adults often choose to seek a formal autism diagnosis for a variety of reasons, including:

Difficulty understanding and abiding by social rules and relationships
Significant problems with executive functioning and organization
Notable sensory sensitivities to sounds, textures, food etc.
Difficulty maintaining a job due to lack of neutrotypical social skills
Feeling a sense of not belonging or having any meaningful relationships with others
Desire to better understand adolescent and childhood struggles

The Difference Between Formal and Self-Diagnosis

When seeking a formal autism diagnosis, individuals may experience obstacles such as finding an experienced provider, long wait lists and high costs associated with the assessment. Before seeking a formal diagnosis, it is important to understand the difference in services and resources that are available.

Because there are barriers to getting a formal assessment, some individuals who not do see a need for disability-based services may choose to claim an autism identity through self-diagnosis. Claiming a self-diagnosis of autism gives people a label that they identity with and can share to describe aspects of their personality or behaviors. Below is a chart that shows what individuals can access with a formal diagnosis of autism or self-diagnosis.

Resource/Service	Formal Diagnosis	Self-Diagnosis
Access to accommodations in post-secondary education	✓
Access to services through Board of Developmental Disabilities	✓
Eligible to receive SSI	✓
Eligible to open a STABLE account	✓
Protection under ADA and access to work-based accommodations	✓
Sense of self awareness	✓	✓
Access to support groups	✓	✓
Access to online communities	✓	✓
Access to mental health services	✓	✓

What is an Autism Assessment?

An assessment for a formal autism diagnosis can be performed by a psychologist or psychiatrist who offers adult assessments. Contacting a local autism agency like Milestones may be helpful in locating providers in the area.

How to Be Ready for an Autism Assessment (with Pictures) - wikiHow

Individuals who choose self-diagnosis are still members of the autism community. Self-diagnosis is helpful if the individual is not currently insured; however, there is no harm in identifying as autistic while waiting for a formal diagnosis. There are several websites that can be found on the internet with self-diagnoses quizzes – the best way to establish an informal diagnosis is by looking over the formal diagnostic criteria for Autism Spectrum Disorder.

How Milestones can assist you

Individuals who are interested in seeking a formal diagnosis or connecting to resources for those who self-identify as autistic should contact the Milestones Helpdesk to get connected to the most appropriate resources for them. To get started please visit our Helpdesk web page to complete an intake form.

The Milestones Autism Planning (MAP) Tool is available to guide you through every age and stage from early childhood through adulthood. You can browse through the tool and find several articles that are geared specifically for autistic adults.