In The Spotlight

Having a Child With Autism

An Analysis of This Year's News on Autism Spectrum Disorder and What to Do About It

It is undisputed that autism is being increasingly diagnosed at an astonishing rate. The most recent nationally representative data indicates that about 1 in 200 children between the ages of 4 and 17 have been diagnosed with autism. Since this data did not account for those who were diagnosed with other forms of autism spectrum disorder (ASD) - pervasive development disorder, not otherwise specified, Rett Syndrome, Asperger Syndrome, or childhood disintegrative disorder - the actual prevalence of children who have any type of ASD cannot be determined[1] and is likely higher than 1 in 200. No specific reason has been determined for this rise in diagnosis, though suspicions and hypotheses abound. Earlier this year, a look-back study suggests that changed criteria in the diagnoses of developmental language disorders and autism may have contributed to the rising rate of autism diagnosis[2].

There still exists a segment of our society which does not believe that autism or ASD are genuine biological conditions that significantly affect the lives of those who are diagnosed. On his nationally syndicated radio show, Michael Savage proclaimed autism a “fraud, a racket” and that parents (especially the father) are to blame. Though Savage’s opinion was uneducated and untempered, it attracted attention to this epidemic. We should start a national dialogue on the everyday aspects of this disease.

Unfortunately, the research on the etiology of ASD is incomplete.

Research has identified genetic factors and environmental factors as possible contributory causes to ASD. The most recent research published found no link in autism and the measles, mumps, and rubella (MMR) vaccine for children with gastrointestinal disorders[3]. The original clinical research (led by Dr. Wakefield and also known as Wakefield’s theory) that instigated the fear of causing autism with the MMR vaccine is now under investigation. Allegations of conflict of interest, retractions of findings from coauthors, and the failures at duplicating the results of the study have cast great doubt over the validity of the original paper[4]. Concerned parents may look to the burgeoning field of epigenetics for answers. Twin studies have demonstrated a definite genetic component, but it is unlikely that scientists have found all the genes that are linked with ASD. Epigenetics is the study of why some genes are “expressed” or “silenced.” To put it simply, if you have a set of genes that cause ASD that are not expressed - i.e., silenced - you may not get ASD. Epigenetics tries to scientifically pinpoint what environmental factors cause the expression or silencing of the gene(s). Are there real changes in the world that are causing more expression of genes linked to ASD?

Parents and guardians of children with ASD face a daunting array of challenges.

With patience and a multitude of trained professionals, many children with ASD can develop independent living skills to some extent. Because the precise reason for onset of ASD is unknown, there exists a myriad of different treatments for children with ASD. There is currently no consensus on the best course of treatment. Some treatments have more grounding in scientific research – psychiatric medication; behavioral interventions such as speech therapy, occupational therapy, or relationship development intervention; and complementary approaches such as music, art, or animal therapy. Other treatments – like restrictive dietary interventions, avoidance of chemicals, vitamin/mineral supplementation, or chelation therapy - seem extreme (but of course there are fervent supporters of these treatments and anecdotal evidence that they work). Just last month, the National Institute of Mental Health (NIMH) released a statement cancelling a proposed study on the effectiveness of chelation therapy on children with autism[5] . According to NIMH, in a 2007 study on rats[6] , rats not exposed to lead but were treated with chelation suffered lasting cognitive and affective dysfunctions similar to lead exposure. As a result, ethical concerns about undue risks to test subjects in such a human study prompted NIMH to decide not to forward this research proposal for approval.

In addition to the uncertainty regarding treatment, another recent study indicates an average of 14% loss in household income when there is a child with ASD in the household[7]. The conundrum is clear: How are families to pay for all of this? The cost of providing individualized behavioral therapy over the lifetime of a child with ASD alone costs $206,337[8] (2003 dollars and not adjusted for inflation). While California has enacted the Lanterman Developmental Disabilities Services Act (Lanterman Act) of 1969, which go beyond federal benefits program in providing such services, other states have not followed in kind. Moreover, not all children with ASD qualify for Lanterman Act services. Presently, families may be able to procure Social Security disability benefits for their children with ASD. This usually involves a lengthy application process applying an intricate analysis of medical records and family testimony, and not every child will qualify. As with other severe child disabilities, additional issues include the family’s own health deterioration. Having a community support structure, especially if it includes those who are going through or have gone through similar challenges, would be extremely helpful for families.

To address some of these challenges, families should seek services and information simultaneously. Services for children with ASD may be obtained through the state’s Department of Human Services[9], the local school district, or local nonprofit agencies and support groups. Local nonprofit agencies and support groups may step in where the state and the education system are unable to help; moreover, families should reach out and form a good support framework – include extended family, neighbors, case workers, or anyone who seems interested. Feelings of hysteria and hopelessness do not help solve any problems, and being an active seeker of solutions will end up benefiting both the child with ASD and the family.

In conclusion, while we wait for the scientific community to offer insight into the etiology and treatment of ASD, help is needed to meet the needs of children with ASD. Each family must make their own informed decision about whether to vaccinate - should we let fear of autism cause a return of infectious childhood diseases such as measles? Common sense and pragmatism may be one’s best guide. What does my child need in order to receive an education? Should he seek psychotherapy? Is she improving after seeing this therapist? Families must develop their own course of treatment through education and trial and error, balancing out potential gains with potential harm. In the end, you know your child best, and, fairly or not, the ultimate responsibility is yours to make, weighing input from educational and healthcare providers. Hopefully, given all the recent influx of information and controversies resulting in a national debate over issues surrounding ASD, the increased attention would spur the discovery of effective treatments.

People With Disabilities Foundation provides representation services for children who are trying to secure Social Security disability benefits. If your child lives within our service area (the greater San Francisco bay area) and has been denied Social Security disability benefits, please contact our office for possible representation of your case. See www.pwdf.org/services.html for additional details.