10 Reasons You Were Missed: Late Diagnosis of ASD/ADHD

Who would I be today if I had been diagnosed as a young child? How would my life be different? 

These are common questions people who have been diagnosed later in life with ADHD (Attention Deficit Hyperactivity Disorder) and/or ASD (Autism Spectrum Disorder) ask themselves. It is incredibly frustrating to know that you were “missed.” Instead of receiving the support you needed when you were a child, you were labeled as “lazy” or told that you “lacked willpower.” Maybe you were criticized for being “cold” and “uncaring.” Understanding why you were missed can help you understand yourself and how being neurodivergent has impacted your life. 

Here are some of the most common reasons you may have missed: 

1. There’s already an identified “patient” in the family

You may have been missed because you had a sibling or other family member who had more impairing traits or needed more support than you did. So compared to that family member, your traits and symptoms were not as alarming to your parents.

2. You always did well academically

Academically, you were glowing. There were no red flags for teachers. There was no indication on the grade books that you were struggling. Oftentimes, people get diagnosed at school. If there are no indications that you are struggling in the classroom, there is no reason for the school to do testing. You may have been working twice as hard as your peers, but because you were still able to succeed, your teachers did not notice that you were working twice as hard. 

3. You were a daydreamer / compliant and not hyperactive

You may not have exhibited hyperactivity and impulsivity; instead, you were more compliant. It is much more difficult for teachers and parents to notice a child daydreaming than it is to detect a child who cannot sit still. 

4. You had an accommodating / nurturing home environment

You had a very accommodating and nurturing home environment. Your parents may have accommodated what they labeled as your “quirkiness” and learned how to handle your meltdowns by preparing you for changes happening and transitions occurring throughout the day. They may have said, “Hey, we are going to do this at the end of the day,” or “This is what’s happening tomorrow and you have two more minutes before we have to transition to another activity.”  Your parents may unknowingly have been using behavioral therapy skills typically taught to parents and caregivers by clinicians.

5.  Your parents normalized problematic or unwanted behavior

Similar to your parents accommodating your behaviors as a child, your parents may have normalized unwanted behavior. Your parents may have seen problematic or unwanted behavior as a personality trait rather than a sign that you were neurodivergent and needed extra support.

6. Inadequate Resources 

There may have been inadequate resources at your school. Maybe your teachers did see that something was wrong, or your parents saw that something was wrong. However, the school had 40 other kids waiting to get tested. So by the time you were going to be able to get tested, 12 to 14 months would have passed. You may have graduated by then. This often happens in school districts that do not receive adequate funding. 

7. Twice as Exceptional/ High IQ

Often if you are twice exceptional, meaning you have a high IQ plus neurodiversity, then you get missed because you are able to find ways to compensate or to make up for your challenges. You may have had trouble sitting still and paying attention in class. However, because you have a high IQ you were able to make up what you missed in class. 

8. Misdiagnosed and missed opportunities

You may have been misdiagnosed. Oftentimes neurodivergent people are misdiagnosed with avoidant restrictive food intake disorders or restrictive eating disorders. Moreover, neurodivergent people may be misdiagnosed with oppositional defiant disorders, trauma disorders, and suicidality. These misdiagnoses are missed opportunities for neurodivergent people to get the answers and help they need. Only when clinicians ask the right questions and explore what your experience is actually like can a proper diagnosis take place. 

9. Shame, Denial, and Ableism 

Your family may have not wanted to “label” you. Unfortunately, shame, denial, and ableism lead many parents to want to avoid their child from being diagnosed. Some parents acknowledge that their child has traits and features of Autism and/or ADHD but do not want to label their child. This is especially unfortunate because a diagnosis can get you protections and rights under the American Disabilities Act. These protections allow neurodivergent people to get the accommodations they need to be successful. 

10. Masking and Compensatory Strategies 

Lastly, you may have gone undiagnosed as a child because you could “mask” your symptoms. Masking is when neurodivergent people try to hide their symptoms often by overcompensating for them. It is not a form of managing ADHD or ASD; masking is a form of impression management in social situations. With ASD symptoms, masking can occur when you force yourself to make eye contact. Masking can also look like memorizing scripts and gestures in order to appear more socially acceptable, or when you suppress or push through uncomfortable sensory input. People with ADHD symptoms may mask by purposefully suppressing their voice out of fear that they will come across as being too talkative. People with ADHD may also mask by hiding their disinterest and frustration while trying to push themselves to do a low-interest activity. 

The Bottom Line: 

A late diagnosis of ASD and/or ADHD can lead to a number of conflicting emotions. A late diagnosis can feel liberating as you learn more about how your brain works and learn to understand the reasons why you struggle in certain areas. On the other hand, a late diagnosis can also bring feelings of sadness for your younger self who did not understand why they were different. However, it is important to note that being neurodivergent does not simply need to be learning how to cope and manage unwanted behaviors or symptoms. Being neurodivergent can also mean celebrating and cherishing your unique abilities. It can lead you to find a community of others who understand and share similar interests. 

10 Reasons You Were Missed: Late Diagnosis of ASD/ADHD

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