Self-diagnosis for Autism: Positive and Negative Effects on the Neurodivergent Community

Self-diagnosis for autism can have both positive and negative effects on the disabled community.I received my diagnosis simultaneously with my youngest child's diagnosis at the age of 4. At 24, I wasn't prepared to fully comprehend what this meant. But I knew then it would explain so much about our family and myself once and for all. 

 Although the outdated term 'Asperger's' was whispered, it was never spoken directly to me. My academic struggles were dismissed as mere hyperactivity, with my ability to recall information verbatim being reduced to a 'robotic' trait. I endured bullying for my perceived 'weirdness,' but I persevered, utilizing the same cognitive abilities that made me a target to survive. Twenty-five years ago, I collaborated with the school district on a pioneering autism integration project at my son's school, driven by a desire to better understand our place within a society that often marginalizes neurodivergent individuals.Lately, a trending topic on TikTok has sparked a debate about whether self-diagnosis can be harmful to individuals and the neurodivergent community as a whole. As we explore this issue, there are several key points to consider.

Positive aspects:

1. Empowerment: Self-diagnosis can empower individuals to take control of their diagnosis; and understand their neurodiversity. 

2. Accessibility: Self-diagnosis can provide access to autism resources and support for those who may face barriers to formal diagnosis, such as long waitlists or inadequate healthcare.

3. Community connection: Self-diagnosis can help individuals connect with the autism community and find support and acceptance.

4. Reduced stigma: Self-diagnosis can help reduce stigma by promoting ownership and pride in one's neurodiversity.

Negative aspects:

1. Lack of professional evaluation: Self-diagnosis may not involve a comprehensive professional evaluation, potentially missing co-occurring conditions or other important factors.

2. Misdiagnosis or misunderstanding: Self-diagnosis may lead to misdiagnosis or misunderstanding of autism, potentially perpetuating stereotypes or misconceptions.

3. Inconsistent support: Self-diagnosis may not guarantee access to consistent support and accommodations, as these often rely on formal diagnosis.

4. Medical professional skepticism: Self-diagnosis may be met with skepticism by medical professionals, potentially leading to delayed or inadequate support.

To promote a supportive and inclusive environment, it's essential to:

a. Encourage self-identification and self-advocacy.

b. Provide accessible and affordable diagnostic evaluations.

c. Offer support and resources for self-diagnosed individuals.

d. Educate medical professionals and the public about autism and self-diagnosis.

e. Foster a culture of acceptance and understanding.

By acknowledging both the benefits and limitations of self-diagnosis, we can work towards a more inclusive and supportive environment for the disabled community.

Here are three resources for people to learn more about Autism Spectrum Disorder (ASD)

- National Institute of Mental Health: NIMH offers free brochures and shareable resources, including digital resources to spread the word about ASD. It also provides information on the prevalence of ASD in the U.S. and research programs focused on the characterization, pathophysiology, treatment, and outcomes of ASD and related disorders.

- Autism Speaks: Autism Speaks influences policy at the state and federal government levels, working with Congress, the White House, state legislators, agencies, and regulators. The organization also offers the Workplace Inclusion Now (WIN) program to help people with autism find employment and provides information and support for families.

- Facts about ASD: This resource provides basic information about ASD, including symptoms, risk factors, screening, treatments, and what to do if you're concerned. It also offers developmental milestones that children should reach from 2 months to 5 years of age, plus interactive tools for parents and staff to help keep track of the milestones.