Autism is a lifelong disability that affects not only the person diagnosed, but their entire family. When a child has autism even the simplest activities such as feeding, bathing, cuddling, sleeping and play are a challenge for parent and child. Autism is a pervasive developmental delay – that is, children with autism chronically lag behind their peers by at least six months and often more. Many begin school non-verbal, not yet toilet trained, not able to dress themselves, certainly not ready to tackle reading, writing and arithmetic. Because social interactions are impaired, it is common for them to have difficulty socializing with their classmates or understanding the rules of the classroom or playground. They may not be capable of keeping quiet in the library or during a test. Tantrums are also quite common.
The only medically approved treatment for autism to date is a behaviour-based therapy such as Applied Behaviour Analysis (ABA – sometimes called Intensive Behavioural Intervention, or IBI.) This is often delivered in an educational setting, or in a preschool setting that places emphasis on play and social interaction. An example of the latter would be the Early Start Denver Model. Parents of kids in behavioural programs may begin to see progress in the first few sessions. I know I did with my son. But that progress was just tiny baby steps, little things like him learning to imitate a gesture the therapist demonstrated. It can be years before all the little improvements begin to add up in such a way that the casual observer will recognize a significant change.
I can tell you, those early years seem to stretch on for an eternity. For us, they were filled with weeks and months of sleepless nights, dealing with a restless child who never slept more than an hour at a time. They meant that every normal family activity – from getting kids off to school in the morning or taking a walk in the park, to grocery shopping or going swimming – had to be meticulously planned out. Routines had to be followed, and backup plans instituted. Even with all this care there were days when some ignorant passerby would stop to criticize my parenting skills in the middle of a crisis, or when my husband would be approached by a police officer who wanted to know why our son was screaming at the top of his lungs and throwing himself to the ground.
Alternative therapies for autism
It’s not surprising that many people would like to completely eliminate autism – now! It’s not surprising that both those directly affected by autism and the general public too, see medically recommended therapies as ineffective. Autistic people are rarely institutionalized the way they were in years past, so our kids are much more visible than in previous generations – warts and all. And because behaviour therapies take time to do their job, as parents we face long years of coping before our children start to reliably behave like real little human beings instead of Tasmanian devils. People often make the mistake of assuming autism treatments are not working at all. That leaves the door open for those who sell alternative therapies: dietary changes; vitamin, mineral or herbal supplements; chelation to remove heavy metals such as mercury; hyperbaric oxygen treatment.
Alternative therapies for autism can be very expensive because they aren’t supported by valid medical research, and are therefore not government funded or covered by insurance. They can involve extensive travel, repeated laboratory testing used to “prove” to the parent the protocol is working, or buying a range of specially prepared foods. Some have even been declared dangerous when used on autistic children.
Rejecting proven treatments for autism
It is easy to reject medically recommended treatments if you are misinformed about them. Belief that prescription drugs are the primary medical treatment mode for autism is sure to chase away many concerned parents, especially with the current fervour over the pharmaceutical industry and the concern about severe side effects for children taking medications for psychiatric disorders. It’s crucial to research the subject before rejecting standard treatments, however, and to find a doctor the family can work with. Medication is at best a relief for severe symptoms that prevent the child from getting behaviour-based therapy. It is not a treatment for autism itself, nor should it replace an appropriate behavioural therapy. By the same token there is no evidence to show that any alternative therapy can replace behavioural intervention either. You can refuse drugs for your child if you feel they aren’t necessary, but no non-medical alternative can be expected to replace the required behaviour therapy.
Behaviour therapy, not discipline
As the parent of a severely autistic child, one of the things that hurts the most is encountering someone who denies autism outright, or who suggests that my son’s autism would soon go away if I would just discipline him. I wonder if these same people would talk that way to the parents of a child with cancer? Would they blame the parents for not feeding the child an organic or gluten-free diet, or tell the parent cancer is just a bogus designer disease some pharmaceutical company came up with to sell drugs?
Intensive behavioural intervention is not the same as discipline. It is a long-term treatment that follows a specific, research supported protocol. I like to think of the ABA my son received as a treatment that helped him develop an internal filing system. ABA is kind of like taking a course on how to study before returning to school after a long absence. It just helps autistic people make sense out of all the stimuli, all the situations, all the people and things they will encounter each day.
Behavioural intervention is a medical need for autistic children
For my son, living in this world is like landing on an alien planet where nobody speaks his language, nothing is what it seems to be, nothing is where his mind logically expects it to be. His therapy helped him decode the world so he could become an active participant in it. He required his ABA, just like a diabetic requires insulin or a child with cancer requires chemotherapy.
He required the love of his family as well, and he required a firm hand from all the adults in his entourage at times – parents, teachers, therapists, aides. Part of his autism treatment over the years has been saying no to him, disciplining him with a time out, or making him “try again” until he gets something right. A good deal of his progress is due to the years of being taught, over and over, how to greet someone or how to ask for something he wants politely. But none of that progress would be possible if he had never learned to imitate a behaviour we model, or if he had never learned to follow instructions, or to link cause and effect.
Behaviour therapy is the foundation upon which we can build other approaches to helping and teaching an autistic child. It’s an uphill battle, even with the therapy. Without it, we would have an even rougher journey.
Jennifer Bails, “Boy’s death prompts questions about chelation.” Tribune-Review
Scott Gavura, “Chelation: Compounding pharmacy’s problems.” Science Based Medicine
“New AAP reports help pediatricians identify and manage autism earlier.” American Academy of Pediatrics news release
Peter Lipson, “Is there no end to unscientific treatments for autism?” Science Based Medicine