Autism. Ten things a parent should know about services and resources. Observations from a parent with an ASD child.

1. Cure-alls, remedies, and books sell. Autism is, unfortunately, a money-maker. Autism is now posting epidemic levels and the latest statistics suggest 1:100 are born with autism in the United States. A conservative estimate is 1:150. These numbers have an unfortunate side effect: people who make money on autism by selling books, cure-all remedies, which include expensive diets and supplement regimens, and other controversial treatments that run the gamut from acupuncture to hyperbaric treatments. Don’t expect your insurance company to foot the bill. It’s worth mentioning that these treatments are largely not evidence-based, in other words little to no studies have been conducted on these alternative treatments. This dovetails with #2 below “Follow their lead or structure their environment” and “The great food debate” below #3. Books that are hot market items for interested readers are those that focus on the debate over immunizations and whether they cause autism or not. This is a very emotionally-charged topic in the autism community because nobody knows for certain what causes autism. Only time will tell but in the meantime authors are cashing-in on the topic.

2. Follow their lead or structure their environment? This is a huge debate in the behavioral and medical community regarding how best to educate a child with autism and frustrating for parents. Do you follow the kid’s lead or do you structure their environment with drills, PECS, and picture schedules? The disagreement sows confusion for me as a parent because each side insists they are right and the other is all wrong. There’s simply no consensus. The medical and behavioral establishments say evidence-based therapies work such as ABA and discrete trial. On the other side of the debate is the more radical DAN (Defeat Autism Now) and Hammond type programs who say following your kid’s lead (behaviorally) or flushing their systems of toxins by using strict diets which include supplements and GFCF regimens are the best approach. The biggest loser is the confusion this sows for parents. My experience is that if I were to follow my child’s lead I would be tickling him 24/7/365. This is the only behavior that motivates him with the exceptions of food reinforcement. I went from drill-based therapies (ABA) to play-based, to floor-play (follow-their lead), and am now back to drill-based ABA activities and therapies. Both have been marginal but of the two, ABA drills have done better with many modifications, improvisations, and of course food reinforcement.

3. The great food debate: junk science or cure-all panacea? It might be good if your kid has irritable bowel syndrome (IBS) but don’t go on a GFCF (gluten-free, casein-free) diet thinking your kid will dramatically improve cognitively. I often come across articles on the web, or even in books about how “Little Susie” dramatically improved with her changed diet. She went from nonverbal to verbal over the course of a few months (if not a few days). Why I find this unbelievable is that I have yet to meet a parent of a child with autism who has told me this. Most of my son’s classmates are on diets or strict food regimens, GFCG and all, and have been for years, and they are still as non verbal as they were when my son started going to school with them three years ago. GFCF is worth a try if you find that it improves your kids’ digestion and bowel regularity, or has allergies, but I wouldn’t try this potentially expensive and time-consuming approach if you think your kid will improve cognitively. The one positive review I’ve heard from a personal acquaintance was from a parent of a higher functioning ASD child. His mother has insisted that her son has improved greatly while on a diet both behaviorally and verbally, but her child is still autistic.

4. Expect change and turnover among your service providers. I’ve found this especially true for behavioral therapy vendors. Be prepared for the time wasted on administration and the time it takes for your child to reacquaint with new service providers especially your child doesn’t transition easily, or get a follow-up evaluation. You might find that one behavioral therapy vendor or speech therapist is not the best match for your kid. Before you sign-on ask them how long the sessions last and how much of that time goes towards supervision and notes (administration). Ask them if they have experience working with autistic children. Often behavioral therapy vendors hire students from college (or any other person with dubious experience and motives) who have not yet completed their degree and have little to no experience. Some are good, others are just looking for a paycheck and it shows and turnover among them is frequent. Check the certification of your behavioral supervisor – do they have BCABA (Board Certified Associate Behavioral Analyst) or BCBA (Board Certified Behavioral Analyst) certification? If they don’t, you should check their credentials more thoroughly as there has been an explosion of ABA (Applied Behavioral Analysis) vendors that have come out of the woodwork in the last decade.

5. Support-group and program bias. Support groups and after-school programs, in my experience, tend to favor the higher functioning children with Aspergers and are less available for lower functioning in my experience. I live in an area where there are supposed to be good to excellent resources available for ASD kids. I inquired about getting my child involved in an after school program for kids with ASD (Autism Spectrum Disorder) and I was told he was not independent enough. I’m not sure he’s made that much progress in the last couple years with independence. I inquired about the summer programs at the local public school district and again, I was rebuffed, because my kid was not ‘independent’ enough. A civil right violation at the very least but worse, an embarrassment for a school district which prides itself on inclusion. Support groups also seem to be more prevalent for families with higher functioning kids. I can join the ASA (Autism Society if America) support group but it’s a thirty mile drive one way and meets once a week in the evenings and not in the summer. There’s a local support group but only for Aspergers kids/families.

6. Your best resource is yourself. See what works for your child by trial and error. Ask and network with other parents but your best methods will come from your own experiences. What they do in school or during ABA session may not be the best for your kid, so communicate to them what will serve your child best and perhaps they can work with that. School is tougher to control because there are other students in the classroom, hopefully at the same level as your child, but it’s difficult to know exactly how things are done. This is where the IEP comes into play (see # 7). Some schools also have restrictions on how long parents can come in and observe as mine does.

7. Don’t expect too much from your child’s school. Some schools are better than others and often it comes down to the luck of having a good teacher. Your kid could go to a school district with a solid reputation, but could have a poor or inexperienced teacher. On the whole, I’ve found that Special Education teachers are dedicated individuals because the go into the field knowing full well that they will deal with challenging situations that require individualized approaches. Still, you have to be your kid’s best teacher and this complements #6 above. Don’t expect the IEP to change much of your child’s behavior. Sometimes I feel that this document is just a bureaucratic formality. However, do remember you have the right to demand an IEP meeting at any time and to change the IEP it at any time. This is your right, not the schools. School, however, presents a great opportunity to network with your child’s classmates parents. Also, public schools are currently facing budget crunches as are publically funded social services. This can have a trickle down effect on your child’s school program.

8. Don’t expect a huge breakthrough. Instead, focus on the smaller gains. We never got the ‘breakthrough’ we were hoping for and we were naïve to believe that this was imminent with therapy. A combination of our own hopes and us reading accounts led us to believe our son, if diagnosed early enough and with enough hours of ABA, would make a significant breakthrough. He was diagnosed five years ago and since then he has made small gains mostly in the areas of sleep, toileting, and keeping his cloths on, and keeping his seatbelt on in the car. His eating has regressed and we are working on ways to get him to eat more foods. He is still largely non verbal and stubborn in the ways of communication. He still does not understand simple cognitive skills such as counting or spelling and cannot write his name let a lone any letter of the English alphabet. After four years of OT (Occupational Therapy) he still cannot draw a circle or a straight line.

9. How to manage dead-time. This all depends upon what interests your child. My son likes swimming and physical activities. The four walls of the house are his worst enemy but sometimes it can’t be avoided. Summer breaks present the biggest challenge because there is much time to fill for your child with autism. Try to enroll them in a summer program providing the program has a strong history of inclusion (See YMCA recommendation below). Other school holidays or days off present similar challenges.

10. Some helpful websites and organizations. The Talk About Curing Autism (TACA) and ValeriesList.com websites are loaded with information which may be useful for you and your child. The dropdowns have everything from resources, news, newsletters, and ways to help. The YMCA has some excellent programs and often has summer camps that have very good inclusion programs. My experience with them has been good and they are very accommodating for kids with all levels of autism.