Do you suspect you are on the spectrum?  Or do you self-identify as Autistic and are wondering if getting a formal diagnosis is worth it. 

Pros of a Late Autism Diagnosis

Self-Understanding & Validation

For many of us when we first suspect we are on the spectrum or self-identifying as Autistic we start to look back at our lives and question if Autism was a contributing factor in our past struggles and/or difficulties.

A late diagnosis of Autism can provide you with clarity about many struggles and/or difficulties you may have experienced in your lifetime.

Additionally, a late diagnosis of Autism can help you connect the dots on past experiences.

Access to Support & Accommodations

A late diagnosis of Autism can open doors to workplace adjustments, therapy and community resources. 

Workplace accommodations, which are part of the ADA and are often considered “reasonable accommodations” can allow you to perform your job better and may decrease the risk and fear of being let go.

Additionally, a late diagnosis may help you receive any therapy and other Autism treatments (such as occupational therapy, speech therapy, or behavioral therapy) that you may need and gain access to any community resources that is only available to those who are officially diagnosed.

It is important to know thanks to the Affordable Care Act (ACA), insurers cannot deny coverage or increase premiums due to pre-existing conditions, including Autism.

A formal late diagnosis of Autism may be helpful, as it is required by many employers to receive accommodation and to qualify for access to health insurance disabilities programs.

Disability Benefits & Accommodations

A late diagnosis may help in applying for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) if Autism significantly impacts daily life and employment.

Improved Mental Health

If you are struggling with self-blame or experiencing imposter syndrome, a late diagnosis may help you overcome those challenges while improving your mental health.

Additionally, a late diagnosis – combined with therapy and/or other support, may help you unlearn harmful coping mechanisms that you may have developed due to masking.

Stronger Self-Advocacy

A late diagnosis can empower you to set boundaries and communicate your needs better.

Connection with the Autistic Community

With a late diagnosis of Autism, you may feel that you truly belong in Autistic adult communities as you will have a strong sense of belonging that comes from knowing you are on the spectrum.

Cons of a Late Autism Diagnosis

Diagnosis Can Be Expensive & Time-Consuming

Unfortunately, assessments are costly and many insurance companies do not cover the cost.  These costs can range from $1000 to $6000 out of pocket. 

Additionally, waiting times to get assessed can be long depending on your location.  One contributing factor for this is there are not as many professionals who will assess an adult as there are those who screen children for Autism.

Not Everyone Takes the Diagnosis Seriously

Unfortunately, not everyone will take your late diagnosis seriously including friends, family and even professionals who may be dismissive of your late diagnosis.

Limited Support for Adults

Although one of the pros of receiving a late diagnosis of Autism is access to support, it is important for you to know that most Autism services are geared toward children, making it harder to find tailored adult support.

Potential Impact on Insurance

When it comes to your insurance, some providers and plans have age restrictions for Autism-related benefits, which could limit your access to coverage for needed services and support.

Potential Impact on Life Insurance & Long-Term Care Insurance

Some life insurance providers may view Autism as a factor in underwriting, potentially leading to higher premiums or coverage exclusions.

Long-term care insurance policies may be affected, especially if Autism is seen as a factor in future caregiving needs.

Potential Impact on Employment

If you are currently employed, you should know that a late diagnosis of Autism may result in your employer being hesitant to offer disability benefits or support services – even while the ADA (Americans with Disabilities Act) protects against discrimination.

Despite growing awareness, some employers may have misconceptions about autism, leading to bias in promotions, assignments, or leadership opportunities.

There’s a risk of unconscious bias, where colleagues or managers may treat you differently after learning about your diagnosis.

If you request accommodations, some employers may see it as an inconvenience rather than a necessity.

Even with disability protections, getting accommodations (like flexible work hours or sensory-friendly environments) can be a bureaucratic challenge.

Some employers may resist your request for accommodation due to cost concerns or a lack of understanding of Autism-related needs.

Career Changes & Challenges

A diagnosis may lead to self-reflection about past struggles, potentially prompting career changes that could be financially or emotionally difficult.

With a late diagnosis of Autism, you may feel frustration realizing you have been masking for years, which may lead to burnout or the desire to leave unsupportive jobs.

In industries where neurotypical social norms dominate, an Autism diagnosis could be used (explicitly or subtly) as a reason to limit advancement opportunities.

Identity Adjustment Can Be Emotional

When you receive a late diagnosis of Autism, you may experience grief over “what could have been” if diagnosed earlie

I cannot tell you if you should or should not pursue a late diagnosis of Autism.  However, I can share with you some questions you should ask yourself when trying to make this decision:

• Do I need formal documentation for work/school accommodations?
• Will a diagnosis help my mental health and self-acceptance?
• Am I okay with potential challenges that come with seeking a diagnosis?