Parents of children with Asperger’s Syndrome have a particularly challenging role to play. To begin, the diagnosis is difficult to make. Asperger’s Syndrome can be understood generally as a severe and chronic impairment in social interaction and the development of rigid behavior patterns, restricted interests, and activities. While this “label” has become more common knowledge in the last 10 years, the disorder is not new. There is an increased awareness of the syndrome, which hopefully leads to more effective treatment and support for those who need it. A label or diagnosis is only useful if it helps secure the support and treatments to improve one’s quality of life.
Before a child actually is given the Asperger’s label, the parents have usually been desperately trying to understand what is going on for their child who seems out-of-sync with the world. Finally getting a diagnosis can crystallize the parents’ confusion and anxiety regarding their child into an “aha!” moment. From that point, there can be a sense of relief in knowing what the problem is, but also a sense of grief in knowing what the problem is and will continue to be for their child.
The challenges faced by parents of “Aspies” are not insurmountable. With the proper mindset and support system parents can succeed in raising their child with Asperger’s Syndrome. To that end, I have asked some parents that I work with to share their wisdom, experience, and lessons learned in parenting their child with Asperger’s Syndrome. The following are their words:
- It has been most beneficial for us to recognize the sensory issues which can trigger meltdowns. From loud music and flashing lights, to crowds at ballgames and Wal-Mart, we have seen how the stimuli can cause our son to “create” chaos in order to avoid “chaos”. Reading “The Sensory Sensitive Child” helped us understand this issue. We also feel that Occupational Therapy helped our son with his awkwardness and clumsiness. We wish we would have started OT earlier in his life so he would have developed a better self image during the years of playing youth soccer, or tossing a ball in the yard with Dad. One of our most bittersweet home movies is of our son, in his only year of youth soccer, trying to survive the “chaos” of being on a field, in the middle of a crazed bunch of four and five year olds, with dozens of parents screaming at their kids to kick the ball. He learned quickly to avoid being in the pack and eventually developed such an aversion to the itchiness of the knee socks, and the tightness of his shoes, that he couldn’t play anymore. This is somewhat of a metaphor for the rest of his childhood to date.
- As parents, our best learned advice would be to concentrate on the marriage, which results in a lot less “chaos” in the home. Thus, the need for the child to create “chaos” in order to avoid it, is diminished.
- Build a great support network, especially if you are a single parent. No one person can raise a child with Aspergers Syndrome alone.
- Resist the temptation to compare your child to “neurotypical” children or even to other children on the autism spectrum too much.
- Don’t let your child use his/her diagnosis as an excuse not to try or to excuse poor behavior choices. You should still have high expectations for your child, informed by what you know to be legitimate issues.
- Learn all you can about your child’s rights in the public education system. Be prepared when you attend IEP meetings, and don’t let the “professionals” at the meetings intimidate you. You know your child better than anyone else does, and you are your child’s best advocate. And, given the current atmosphere of budget cuts in public education, if you don’t ask/insist, your child will not get what he/she needs.
- Encourage your child’s strengths. Your child will experience a lot of failures (and so will you). So, try to emphasize what your child is good at (it may lead to a future career even).
- Do some things with your child just for fun. There can be a tendency to always make everything a learning/therapeutic event, and we often need to repeat lessons over and over (and over), but don’t forget to enjoy your child as a person also.
- If you are a person of faith, pray for and with your child.
- We had to learn to communicate with our daughter in a way in which she could understand. We could not communicate with her in the same manner we communicated with our other children. We learned that she did not understand facial expressions or body language. She had to learn how to interpret these things, since this doesn’t naturally happen for Asperger’s children.
- Because of “sensory overload” our daughter would run away from school just before gym class or band class. We were able to determine that the unstructured noise would make her anxious that she could no longer handle it and she would go outside the school to calm herself down. We had her removed from gym and band class, she hasn’t left school since.
- We learned that certain medications were helpful in managing mood and attention problems, but there is no “magic pill” that will cure Asperger’s Syndrome.
Much more could be offered in terms of parental advice. If you are interested in learning more about Asperger’s Syndrome or need help and support as a parent, check out the following resources:
- Mid-Ohio Valley Autism Network: Monthly support group, meets the 3rd Thursday each month at 6:30-8:30pm at the Dils Center in Parkersburg, WV 26101 (740) 373 6669
- The Sensory-Sensitive Child: Practical Solutions for Out-of-Bounds Behavior by Karen A. Smith
- Asperger’s Syndrome: A Guide for Parents and Professionals. By Tony Attwood.
- The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism by Temple Grandin and Sean Barron
- http://www.modelmekids.com – A resource for helping children develop good social skills.
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