by Kay Ness
I want to give you some information on autism to ameliorate some of the fear that this term brings to parents. This is a confusing label, especially when you search the literature. I will just tell you some of what I’ve seen from my own experience working with families that have children with autism.
|What Is Autism?
The whole topic of autism is a huge topic and deserves a careful explanation. First, identifying what autism is. Children and adults are identified as being on the autistic spectrum and vary widely in their symptoms. To be labeled on the ASD spectrum, is simply to be found to have certain symptoms and these checklists are readily available from many sources. The time it becomes important to identify where your child falls on the spectrum is when you are looking for having resources paid for by the state or covered by insurance (but good luck if it is anything outside of the mainstream).
Individuals that are a little odd or socially inappropriate with certain sensory issues can be labeled as being on the spectrum (Asperger’s or PDD). Individuals who are totally out of touch and don’t speak or interact are also on the spectrum. So, we are dealing with a wide variety of individuals here with wildly different issues.
A person falls into the spectrum when overwhelming sensory issues (along with metabolic issues which also underlie these problems) interferes with function. When the child starts to engage in sensory play—visual stimming, rocking, hand flapping, lining things up, no eye contact, withdrawing into a sensory world, (and possibly many other manifestation of sensory and metabolic dysfunction) then the professionals start to look at whether a child is autistic.
Some children are born with noticeable issues—not wanting to be held, crying, feeding issues, not meeting language and mobility steps. Some children regress at about the eighteen month age, losing language function and contact with people—parents describe it as the child “drifting away”—a very distressing thing to watch. Many parents identify this time as a reaction to a vaccine and that is why there is so much controversy about this. I have hundreds of history reports that identify a vaccine as the point in time when the child changed—and was never the same. Some parents identify surgery as the time of regression for their children. I have some children on the spectrum that were very premature.
I have some children on the spectrum that were on antibiotics for seven years or so. So, it appears that many things can set off this descent into sensory overload and withdrawal which is called autism. It appears that the immune system is simply overloaded—a toxic overload—causing the child to start reacting to foods, environmental allergens, starting to do sensory play, etc. What the neurodevelopmentalist does is look at what is underlying these odd actions or symptoms, provide activities that directly address those issues, especially the sensory issues. The reason I believe in the neurodevelopmental model so much is that it covers all of the developmental and sensory functions.
I believe that to recover from autism, it must be addressed in three ways: neurodevelopmental, training and metabolic. I’ll discuss all three briefly so you can see how they fit together.
The neurodevelopmental model for autism was first discussed by Carl Delacato in his book, The Ultimate Stranger. He made the connection between sensory dysfunction and sensory overload and the retreat into autism. He identified tactility, hearing and vision as being hyper (too sensitive), hypo (not sensitive enough) or simply distorted—he used the term noisy (I am doing this from memory since I no longer have the book). He stepped way out of the mainstream at the time with this model but since then others have used this model to develop programs such as: the Son Rise Option Institute (who studied with Carl Delacato), sensory integration, NACD’s program of direct sensory intervention and many others.
Let’s talk about tactility first. Autistic children are often very sensitive to light touch—not able to tolerate touch on the skin of their bodies or head or inside the mouth, etc. They also are often seen as being insensitive to pain—the deep pain sensation. Sometimes hot and cold discrimination are also a problem. By directly addressing these sensory issues, much progress can be made. If it feels too intense when someone touches you, you would avoid touch, too. Some children are extra sensitive on just certain parts of their bodies like hands, head (all those haircut problems) and mouth. So, to find the right way to normalize these areas of sensitivity, each child must be individually evaluated.
Visual and Auditory Issues
Visual and auditory sensory issues can also explain the visual sensory play, lack of language (if hearing is very threatening the brain can shut off listening). I have many children with obvious hearing problems—actually listening problems—that test normal on hearing tests. But with an autistic child, one of the first things many parents notice in the toddlers is that the child doesn’t react normally to sounds and they often get hearing tested first.
Taste and Smell
Tastes and smells can also be an issue for these children. All can be addressed with direct stimulation.
If you just look at autism from the sensory model, and do not address the metabolic issues, a child can make great progress with direct sensory intervention and then regress when he gets sick or has allergies and this can be terribly discouraging and frustrating. Hence: the metabolic must be addressed.
I have seen children make great progress with ABA programs. Some of these children are considered recovered and have been mainstreamed. Lovaas claims 47% recovery. I haven’t seen that but I am very impressed by what I have seen. I think that two of the major things that these intensive training program accomplish is stopping sensory play and improving processing to 1 or 2 or 3 from no consistent processing going on at all. I had one little boy in for an evaluation who had done two years of ABA from age two to four—with great results. He appeared normal, intense and very bright. At six years old he was reading at a mid-elementary level. But, after I was done with him, he stood up in his chair and did some visual stimming. It made you realize how sensory he still really was, despite the fact that he had been trained to control his behavior and function.
So, this tells me that children do benefit greatly by intense training, expecting better behavior and function, despite the fact that it is very hard for them. I have seen children considered recovered from ABA, discrete trials, Jimplay (Dr. James MacDonald’s program). I believe our expectations have been too low in this area, i.e. not asking for better behavior when sensory issues seem so overwhelming. Trying to draw the line in evaluating what the child can and cannot do is very difficult. Of all the options, Jimplay is by far the most fun, the most compassionate and Dr. Jim is absolutely firm in his vision of great potential for even the most autistic individual. I do indeed love him for this passion and commitment to parents and children and giving parents the tools they need to help teach their children to be social people.
Simply stopping sensory play—which requires due diligence—has helped children progress. This and getting them processing auditory and visual information can result in giant steps forward in function. Combining the Neurodevelopmental with training is very powerful.
Metabolic is a very difficult area but must be addressed for normal function. I remember very clearly a post from Sherry [a mother whose daughter has a dual diagnosis: autism/DS, ed.] in the past, describing putting her daughter on an IV because of a medical emergency and all of the autistic symptoms disappeared. Because she wasn’t reacting to foods her sensory issues resolved temporarily. That is why parents do Gluten Free/Casein Free diets (GFCF), all the supplements, and other dietary interventions. Some autistic children show terribly abnormal bowel function—overgrowth of candida and other systemic fungal infections; Wakefield found live measles viruses and lesions in the small intestines of many of these children.
Lots of issues here. Heavy metal toxicity does indeed appear to be a part, but it appears to be toxic overload from many areas, not just metals. I am working with many parents using ChemBalance right now. Their years of blood tests show that anion/cation rations (pH) is off in this population. The pH of the gut is way too alkaline. This effects absorption of metals, permeability of the gut and also intestinal flora. Systemic yeast infections have been resolved simply by getting the pH normalized. And this is after years of GFCF, antifungals, all the nutrients normally associated with autism (B6, magnesium, supernuthera, etc.) We are hearing results that parents of autistic children are getting with chelation of heavy metals. What I am hoping to get is metals analysis before and after implementation of Chembalance programs to see if we are indeed getting chelation of metals. Functionally we are seeing great improvements and resolution of infections and allergies not seen before.
If metabolic issues are not addressed, we often see progress and then regressions if the child gets sick or has surgery or allergies, etc.
In each of these categories, there are many, many issues that space and time do not allow. The main point of writing this is to give people an idea of what “autism” is. And to show you that there is great hope for improvement despite the label. As a matter of fact, there is so much new research going on, it is a very exciting time for those of us working in this area. I am seeing very consistent improvement in children with this label. I want you to have hope and keep looking for answers for your children.
Kay Ness is a certified neuro-developmentalist who writes individual, home-based educational programs for parents to do with their children. She is a founding member of ICAN, an association of neuro-developmentalists, and through ICAN can refer parents to a neurodevelopmental practice near their home.