Self Diagnosis FAQ

From our Facebook Page & Group.

SELF DIAGNOSIS (FAQ)

Q: What is self diagnosis? 

A: Self diagnosis is when a person determines that they have autism (which can occur in a variety of ways including informal internet assessments, information from autistic peers, etc) without the help of a medical professional or without a professional diagnosis.

Q: Why self diagnose? 

A: There are many reasons for which someone may self diagnose. Most often, patients experience an unfairness when seeking formal diagnosis’ because they do not it the narrow stereotype that most mental health professionals are taught about autism (which I will discuss below), or they are unable to seek healthcare of any kind due to lack of insurance and/or funding. Other reasons may include concerns about their treatment in the workplace or school, concerns about custody arrangements, concerns about treatment from partners and family members, concerns about loss of freedoms/autonomy or concerns about abusive therapies. Some others may self diagnose in the meantime until they are able to get a formal diagnosis- this is how almost everyone diagnosed in adulthood technically does it.

Q: What’s that you said about the narrow stereotype that most mental health professionals are taught about autism?

A: Most mental health professionals are taught a wide array of startlingly inaccurate things about autism, but I will focus here on the ones that in particular, influence who they will and will not diagnose. It is a common misconception that autism occurs primarily (or only) in white men and boys (AMABs). It is also commonly believed that autism is always noticeable in early childhood. If you are not a 2-10 year old boy (AMAB), the odds of your autistic traits being dismissed by a doctor are astronomical. Doctors and therapists often believe that women and girls (AFABs) and sometimes POC are unable to have autism, or that it is rare. This is false. Mental health professionals also have a higher tendency to dismiss the concerns of women, nonbinary folks, transgender folks, disabled people, people with other mental health disorders, young adults or teenagers, POC, etc. In particular, AFAB persons and POC are dismissed at an alarming frequency. This disparity in treatment and diagnosis creates turmoil in the lives of many people. Doctors are less likely to diagnose autism in adults or teenagers, POC, women or nonbinary people, the list goes on. Doctors will also dismiss concerns of autism if a patient expresses concern that they may have it- they have been reported as saying “If you are asking, you are too self aware to possibly be autistic”. Doctors will also refuse to evaluate a person for autism if they believe the person is able to make eye contact (some can, but others have been told this when looking elsewhere on the face in efforts to mask). There is a lot of bias in diagnosing autism.

Q: I’d like some more information on other reasons a person may not seek a diagnosis. 

A: A large volume of people (particularly in the US) are unable to even see a professional to consider a diagnosis. The US is not on a single payer insurance system, insurance is very expensive. For those not on insurance, costs may be in the several thousands to be seen and evaluated for autism, particularly if a doctor wants to rule out other psychological or neurological causes for traits. Another set of people feel unsafe for various reasons- see below.

Q: Why would someone feel unsafe being formally diagnosed with autism?

A: A formal diagnosis means that in your medical records, there is a report saying you are autistic. In the event that others find out, things can go awry. In some scenarios, it may be safer and smarter for a person to not have that listed in their file. Fear of mistreatment by medical professionals, employers, teachers or other persons who may have authority over you and/or may have your life in their hands is a real and valid fear. Although it is technically illegal to fire someone or refrain from hiring someone because they are autistic, it does happen. It happens more often than you would think. Fear that they will be refused acceptance to or be removed from their dream school program or job may inhibit some people from seeking a diagnosis. Particularly if they need said job to support themselves or a family. In some cases, children may be removed from their home and placed into the custody of another parent or grandparent that is suing for custody if the court is made aware that the parent they initially lived with is autistic. In order to protect their children, an autistic person may refuse to seek a formal diagnosis. There are also countless cases of violence against and murder of autistic people, and it may be safer for some people to slide under the radar, particularly if they have a past history of being abused by someone. If an abuser made this discovery, it could be detrimental. If you are under the age of 18 or in the care of a legal guardian, you may be forced into abusive therapies or treatments like ABA therapy or even violent “cures” like “bleach therapy”.

Q: Aren’t there benefits to being diagnosed?

A: Short answer? There are some, but not enough to outweigh the risks (even if you assume the person has access to a dx). Long answer? a professional diagnosis can help a person get supports that they need- school or work accommodations, disability payments, etc. You may be eligible for scholarships based on being autistic. You will likely have more access to therapy. But frankly, there are not a lot of supports in place for autistic people at this time.

Q: Is self diagnosis accurate? How can someone determine this about themselves?

A: Because autism is a neurotype, and a person knows their brain much better than a stranger who speaks to them for only a short time, self diagnosis could arguably be more accurate than professional. Particularly when you consider that professionals often have inaccurate ideas about what autism is and isn’t. It is possible for a self diagnosis of autism to be wrong, but it is also possible for a professional diagnosis of autism to be wrong.

Q: Should a self diagnosed autistic person still identify as autistic?

A: Absolutely! Identifying as autistic can be very beneficial to all kinds of autistic people- it can give you something to ground yourself on, help you fit in and find communities that experience life in a similar way to you. Owning your neurotype will help you be happier and feel less alone.

Q: Are they faking/seeking attention?

A: No. Why on earth would they? But even if there were a few people who did… Its still important to make sure everyone else knows they are still valid.

Q: Is self diagnosis valid?

A: Of course! Autistic is autistic, regardless of how the person found out about it.

Q: Is self diagnosis important?

A: If you couldn’t tell from reading what is posted above… of course it is!