Roadblocks to Self-Awareness and Self-Acceptance (Part 2:2)

by Sarita Freedman, PhD; FACT Board Member

We know positive reinforcement helps students feel good about themselves. But positive reinforcement alone is not enough for our students with ASD. To effectively help these students understand and accept their strengths and limitations, educators and parents need training that goes above and beyond simple reinforcement techniques. Lack of this specialized training is one of many roadblocks to facilitating greater self-awareness in individuals with ASD. Related roadblocks include a paucity of well-trained diagnosticians coupled with the unfortunate experience of having multiple misdiagnoses over the course of an individual’s life.

Parental confusion about revealing the child’s diagnosis can also contribute to limited self-awareness and self-acceptance in our spectrum students. Many parents hesitate to tell their child he has an autism spectrum disorder. Understandably, some parents don’t like the idea of “labeling” their child and feel individual differences should be accepted and embraced. In an ideal world this may be true, but in today’s world it’s not always so. A label or diagnosis may be the only way to access specialized services or accommodations for these students, especially in the face of budget cuts and economic hardship. Therefore, it is possible that choosing not to tell individuals (at the right time and in the correct manner) about their ASD may actually hurt them in the long run.

Working with a trained professional familiar with ASD can help overcome these hurdles. Parents will need to be courageous enough to identify their own personal conflicts and feelings that stand in the way of making an objective decision about disclosure. Parents naturally feel a tremendous sadness about their child’s disability/diagnosis. They don’t want their child to be stigmatized or ostracized, especially because negative associations about autism still exist and people are often shunned as a result of their differences. Parents worry that if their child “knows” she is different, the child’s self-esteem will suffer. This implies that children are unaware of their differences, which is not true. Students who are different know they’re different, whether they talk about it or not.

When our spectrum students don’t know what makes them different, they develop negative fantasies about themselves. Because no one is talking about their differences or why they are different, they come to the conclusion that it’s a big (bad) secret. Increased feelings of isolation and long-standing self-esteem issues make it difficult for people to ever come to terms with who they are. Recently diagnosed adult clients have shared that before they knew about their ASD diagnosis they believed they were crazy, retarded, psychotic, and numerous other extremely negative attributions. Learning about their diagnosis enables them to read about it, identify with a group of similar people, and feel hopeful about getting help.

Here are some of their insights into the issue of knowing versus not knowing about their disability:

Knowing about one’s disability enables people to feel as if they’re not crazy after all.
Knowing about one’s disability helps people feel as if they belong to a group of others who are like them.
Knowing about one’s disability helps individuals with ASD feel proud of who they are.
Knowing about one’s disability helps people plan their lives in a realistic manner, in both future career planning and family planning.
Knowing about one’s disability helps people understand themselves and move toward greater self-acceptance and less self-blame.
Knowing about one’s disability helps people advocate for themselves and talk about their strengths and challenges so others can understand and accept them.
Knowing one has an ASD gives people an opportunity to look up to their own role models…Temple Grandin, Stephen Shore, Jerry Newport, Thomas Jefferson, Albert Einstein, or other individuals with known or suspected ASD.
Knowing one has an ASD enables people to find others on the spectrum for mentoring and/or friendship.
Genetically speaking, individuals with ASD have a right to know.

Humans carry an innate desire to belong and fit in. People who, for whatever reason, don’t fit in can mourn their differences throughout their lives. Individuals with “invisible” disabilities such as ASD, epilepsy, or learning disabilities are especially at risk. It’s almost as if they carry a “secret” no one can see, yet they very much know it’s there and it sets them apart from others. This can be a significant roadblock to self-acceptance in individuals with ASD.

The profile of strengths and weaknesses in ASD is also highly inconsistent from individual to individual. There often isn’t one single, identifiable “look” or behavior pattern. This makes it difficult for some parents and families to accept their child has a disability of any kind. In fact, many parents of individuals later diagnosed with ASD believed they had a “normal” child during the child’s early years. Coming to terms with the diagnosis is painfully difficult. Even when parents accept the diagnosis, they often become confused when at times their child is “right on,” can answer questions, follow directions, etc. Unfortunately, inconsistency in expression of symptoms is the most consistent feature of ASD.

The many roadblocks to acceptance for families of individuals with ASD can complicate the process of self-awareness and acceptance for the individual. One way parents can help their child accept the challenges and strengths that autism brings is to model tolerance for differences in all individuals throughout the child’s life. Children need to learn that ASD doesn’t define them and in some ways having an ASD gives them strengths others don’t have. Exposure to older, successful individuals with ASD can also offer a sense of hope to a child on the autism spectrum. Parental acceptance, unconditional love, and open, sensitive and proactive discussions about the child’s strengths and weaknesses will go a long way toward developing greater self-awareness and self-acceptance in the child with ASD. It’s never too soon to start.

BIO

Sarita Freedman, PhD is a licensed psychologist with over 30 years’ experience working with children, adults and families. She is the author of Developing College Skills in Students with Autism & Asperger’s Syndrome (Jessica Kingsley Publishers, 2010).

This article was first published in the Autism Asperger’s Digest, May-June 2010 issue.