A formal diagnosis is an "official" autism diagnosis given to autistic people by a mental health professional, usually a psychiatrist or psychotherapist. This form of acknowledgement that a person is autistic is in stark contrast to claiming the "Autistic" label via self-diagnosis.
Formal diagnosis vs. self-diagnosis
It is a personal choice whether to seek formal diagnosis of your autism, and whichever decision you choose to make is valid. It is believed by the vast majority of the autism community that self-diagnosis is 100% valid. You may identify as autistic even if you have not been formally diagnosed. In The United Kingdom it can be very hard to get a diagnosis of autism / aspergers, especially if you are older. If you think you are autistic in the UK then see your doctor, ask for a referral and do not give up. It takes time. Just keep trying.
Pros and cons of a formal diagnosis
Please keep in mind that it is both valid to want a formal diagnosis and valid to not seek a formal diagnosis.
- Some people choose to seek formal diagnosis if they need documentation of their autism by a professional in order to qualify for certain accommodations such as public disability benefits.
- Some people feel that it can be validating to receive a formal diagnosis.
- In the UK there are a number of support organizations available when one has a diagnosis of autism. One of the things they do have in certain areas is an Autism Alert Card which you carry in your wallet. It is recognised by the police and emergency services. If the emergency services encounter you they can see this card and then know how to deal with you - the card has details about autism and how you might react in a situation; explaining you might have communication problems; that the behaviour of them and other people might seem threatening to you; that you might feel frightened, threatened and overwhelmed; that you might be experiencing sensory overload and that you cannot cope.
- There are many barriers to receiving a formal diagnosis including cost, wait times, and lack of access depending on your location, as well as the possibility of inaccurate assessment due to lack of education among professionals.
- Many marginalized people have difficulty finding a qualified professional, and some professionals fail to see Autism in women and other marginalized people.
- There are some places that can- or even do!- put restrictions on formally diagnosed autistics. Please see drawbacks of being diagnosed for more information.
Diagnostic process in the US
Various mental health professionals are qualified to make a diagnosis of autism, including psychiatrists, psychiatric nurse practitioners, psychologists, and even family doctors, though many professionals who do not feel they have adequate expertise in autism diagnosis will refer you to others. The biggest consideration in the US is cost, as this can vary greatly depending on whether you are insured, what type of insurance you have, and where you go to seek diagnosis. The most common practice that professionals will refer one to (especially children) is a practice of (usually) psychologists who specialize in "psychological testing." This is usually a long process (may be 2 or more hours and can span over the course of multiple appointments) in which multiple formal tests will be administered (usually questionnaires, they may do a standard assessment for all patients that tests for other disorders besides just autism, and may include an IQ test or computerized testing for ADHD - this is considered neuropsychological testing). You will usually receive a long report which details the tests that were performed, the results, and the psychologist's recommendations for treatment, which you should be given access to as well as your referring provider. These tests can certainly be helpful, but they are not always accurate. Alternatively, you may be evaluated by a psychologist, psychiatrist, or psychiatric nurse practitioner in a less formal manner known as a clinical interview (this may or may not include questionnaires), and this is also a valid route to obtaining a diagnosis. You usually will not receive a written report in this case, but if you are informed that you are diagnosed with autism, you can request documentation of this from your provider.
Steps to seek diagnosis in the US
- Look up specialty autism clinics in your area. Even if one is out of your area, they may provide telehealth services, but insurance coverage varies by state.
- Find a clinician in a private practice who is knowledgable about autism. This can be through word of mouth, recommendations from others in the community or local Facebook group, or resources like Psychology Today's "Find a Therapist" tool here. Though not all therapists can provide formal diagnoses, this database includes providers who may perform diagnostic services as well.
- This database allows you to filter mental health professionals by location, profession, and area of expertise. If you are specifically seeking a formal diagnosis, look at the professional's credentials. Those with MD, NP or PMHNP, PsyD, or PhD are usually able to provide diagnoses, but read their bios to get an idea of what services they provide. Their pages include contact information, so you can make a phone call or send an email to inquire about services as well.