Some parts of this resource list may only be applicable to the United States.
Last updated April 2017.
Obtaining a diagnosis is a highly personal decision that has lifelong consequences. A formal diagnosis is not required to participate in the autistic community. Some resources may also be available to you without a formal diagnosis. You should ask yourself and answer some questions beforehand.
Things to consider first.
Is it actually required to receive services?
- Do you want to receive services/accommodations? If not, self-diagnosis can usually serve your purposes.
- Is it required for you to get workplace accommodations?
- Is it required for you to get educational accommodations?
- Will it help you apply for disability benefits?
- Is it required to qualify for disability programs/support services in your area?
- Is it required to obtain services like occupational therapy?
Questions to answer regarding consequences
- Do you know how a diagnosis will affect current life plans? Autistic people often face discrimination in the workplace, immigrating, in parenting, in health care, at school, and elsewhere. A diagnosis and/or disclosure can exacerbate this discrimination due to perceptions of autistic people.
- Will you want to immigrate someplace? Many countries, like Canada, deny immigration visas/citizenship to people with disabilities and their families under the language of being likely to contribute to health care, benefits, and taxpayer costs.
- Do you currently have custody of a child or will you in the future? That could be put at risk. Disabled parents routinely have their children taken from their custody.
- Do you want to adopt a child? That could be negatively impacted (in the form of a denial) if you are known to be autistic.
- Do you have a family who would try to put you under guardianship, take any kids, or otherwise use a diagnosis as leverage? Abusive families, or families who are misinformed about autism, may use your autism diagnosis as “proof” you need to be put under guardianship (This means, most of the time, that a person has a guardian who makes most or all of their major and minor life decisions), or have your children placed with them instead.
- Do you ever want a job with a security clearance? That could be impacted negatively.
- Do you ever want to join the military? An autism diagnosis may negate being able to serve.
- What are your known risks of one day needing complex medical treatment (i.e. organ transplant) that has intensive post-care needs? An autism diagnosis could result in denial of treatment due to being considered unlikely to comply with a post-treatment plan. Some states do have laws protecting people from organ transplant disability discrimination, though these aren’t a surefire means of protection.
- Potential ACA repeal? If the Affordable Care Act gets repealed, pre-existing conditions like autism may not be protected anymore. This means if you ever have gaps in health coverage, insurers may deny you or make you wait a long time to start receiving coverage. Health care costs are extremely difficult or impossible to pay for out of pocket for most people, especially for extended periods of time.
- How much money do you have? Costs for a full assessment (private ones) are often prohibitive.
- Who will be able to access any diagnosis information? The individuals who will know about your diagnosis information may be in positions of power or authority over you and use that information against you.
- Do you belong to more than one community? If you are, for instance, LGBTQ+ or a person of color, providers may treat you more negatively (Such as a trans autistic person having difficulty obtaining hormone replacement therapy or other trans-related care).
Ways to get a diagnosis
- Private full assessment: Often inaccessible to people, even if a person is in primary/secondary school and the law requires an evaluation paid for by the school system. They cost about $2000 at minimum.
- Informal diagnosis by professional: A professional can sometimes provide an informal diagnosis and submit letters to places like universities as proof of disability.
- Vocational Rehabilitation: does free evaluations to determine if someone can receive services from them/what kind of services they need. You should know that VR service providers often have a hard time working with people who have developmental disabilities (which autism falls under).
- A not-for-profit program: This is such as one attached to a research university. This would involve being on a waiting list for maybe months.
- Your primary care doctor: They may know of resources.
- Pros and cons of formal diagnosis: transcript of an autistic Twitter chat (Autchat)