Help With Autism

Over the past week or so I’ve been scouring the Internet for articles on autism, specifically articles related to the change in definition of who is and is not autistic. The American Psychiatric Association is working on a revision of its Diagnostic and Statistical Manual of Mental Disorders. The edits will include a narrower definition of who is and is not autistic; although, the question remains as to how narrow that scope will become.

Autism research and therapy advocates worry that a narrower definition will deprive many autistic individuals of essential services. Those people on the spectrum who are deemed “high functioning” may lose many of the therapies that help them learn to function in society. This could place an undue toll on families who cannot afford treatments on their own. We know that providing services early on in life can make a significant difference to an autistic individual, so the cutting back of services would be catastrophic, not just for autistic people and their families, but also for society that would later on need to support autistic adults who never got the benefits needed to live independently.

As far as researchers know, there is no single identifiable cause of autism. The working theory is that there are multiple causes of autism, some environmental and some genetic. Evidence published in 2011 suggests that abnormalities in brain structure and biochemical makeup may be to blame, or at least may be an indicator that a child is on the spectrum.

The study proposed that about 20 percent of autism is caused by biological issues including prenatal thalidomide or contraction of rubella during pregnancy. The brains of these children develop abnormally early in life, with the brain remaining one or two percent larger than a non-autistic brain. The study also found abnormalities in the cerebral cortex of some autistic children’s brains.

All of last week, BBC South featured stories on high functioning autistic individuals. Though each profile focused on an individual, the experiences of those individuals represent the struggles of many. For example, 28 year-old Alex Jordan described feeling like a prisoner due to her autism. Through the UK’s universal healthcare she likely received autism therapy and continues to work with medical and social workers.

Lots of rules have been set in place to try to protect her. For instance, she is not supposed to go out by herself because she was hit seven times in one year while trying to cross the road. Her autism skews her perception of moving vehicles; cars don’t move fluidly – they can “jump” – and exhaust appears colored which can be disorienting. Still, the young woman described trying to keep a positive attitude and “looking forward to the good things.”

When it comes to researching autism, most of the emphasis is placed on better diagnostics, therapies, and cures – as it should be. However, when a child is diagnosed on the spectrum, it is the whole family, particularly the parents, that are affected. One myth about parents that has perpetuated is that couples with an autistic child are more likely to divorce. The urban legend has the divorce rate at 80 percent.

A recent study has debunked this myth. A study of 78,000 children from the 2007 National Survey of Children’s Health showed that 64 percent of autistic children have married parents, compared with 65 percent of children not on the spectrum. This bit of autism information should help relieve some anxieties for couples with children on the spectrum.

Have you noticed that the mainstream media is paying a lot more attention to autism nowadays? And not just research, but really delving into the lives of people living “on the spectrum.” One extended feature piece recently published in the New York Times particularly caught my attention.

The piece focused on two individuals with Asperger’s Syndrome in a romantic relationship. One part that struck me was when one of the people interviewed for the story pointed out that a lot of autism education focuses on coping in the classroom, learning to control outbursts, and fostering friendships, but little time – if any – is dedicated to helping young adults with autism navigate romantic relationships. Too long it has been assumed that people with autism don’t have the same desires as everyone else, but some things, like wanting to find a life partner, are universal.

As we hopefully blogged last week, California indeed has become the 28th state to mandate coverage of autism. Governor Jerry Brown approved a bill requiring health plans to include coverage for autism as a medical benefit. For many parents this brings about great relief, as the federal health care law does not go into effect until 2014.

Before this bill, insurers could deny coverage for autism treatments by citing such treatments as an educational service. Said California Senate president Pro , “The science clearly shows that treating the mind through behavioral therapy is no different than treating a broken arm or a heart condition.” I’m confident that further good autism information is forthcoming in other states.

The Brown School at Washington University in St. Louis has published the results of a 10-year study of youths with autism in the journal Psychiatric Services. The study found that 46 percent of adolescents with autism spectrum disorder (ASD) used a mental health service in the last year. This can include services to address behavioral issues, anxiety, and depression.

Nearly half of those who received received them through school. African-American youths and children from lower-income families were more likely to depend on school provided services, as therapies can be very expensive. The study highlighted the need for better transitioning planning. Even those who keep up to date with autism information may not realize the dire need for youths with ASD to have access to mental health services post-high school.

A study published in the June issue of Pediatrics stated that between 1997 and 2008 school aged children diagnosed with ADHD, autism, and other developmental disabilities rose by 17 percent. In other words, 10 million kids in the U.S. have a developmental disability. Still, researchers are at a loss for what has caused the increase.

The study surveyed parents of children with cerebral palsy, seizures, hearing loss, autism, ADHD, and more. Boys were twice as likely to have developmental disability. Children from low-income families were more likely to have a developmental disability, with the exception of autism, which seems to be an equal opportunity ailment. The Centers for Disease Control and Prevention has autism information and developmental disability information for those interested in viewing other studies

Parenting is rewarding and exhausting. It takes a lot of control and self discipline when you are raising a child. On the best day, you can feel like you haven’t done enough. You always feel like you could have done more.

Parenting a child with autism, you have so much more to take care of. You can feel so alone. There are groups that you can seek out that will help make you feel like you are doing what you need to do. A support group will help you get advice on how to handle certain situations that you are unsure of. There are also online courses that you can take advantage of as well. It’s best to know that you are not alone and even though it may feel like that, there are other parents going through the same thing as you.

When your child is diagnosed with autism, it’s important to do the necessary research to truly understand what autism is, how it can affect your child and the varying degrees of autism. Talking to your child’s pediatrician and/or a specialist is a good place to start to find answers to any questions you may have.

Next you can do internet research to find articles on autism that examine case studies, treatments, behavioral management therapies and lots more. The best way to help your child have the best life is to learn to understand the A to Zs of autism and be prepared for the unknown. After all, your child’s welfare should always come first.