Part 1 of 2 (see my next entry for part 2)
First let me start by addressing Jenny McCarthy and the GFCF diet.
Former MTV personality and model Jenny McCarthy published two books and has appeared on numerous television shows, promoting the notion that autism is caused by vaccines. She claims that vaccines caused her son’s autism and also claims that her son has been cured via chelation, diets, antifungal medication, and various other unsubstantiated therapies. McCarthy also writes in her first book that she “chain smoked” throughout her pregnancy prior to deciding to live a healthier life after her son was born. Smoking during pregnancy has been well documented as being associated with a higher prevalence of autism and other psychiatric symptoms (e.g., Rizwan et al., 2007). If there is a known mechanism, in this case smoking, for some environmental "trigger" to autism, it is not necessary (and perhaps self-serving) to suggest an unfounded mechanism such as vaccines.
NECC has closely followed the autism-vaccine hypotheses and research related to it. As we have reported in the past, the findings of many large scale studies show no link between autism and either thimerosal in vaccines or the measles, mumps, and rubella (MMR) vaccine. (Previous coverage in our Research Newsletter can be accessed at the first link below). In fact, the September 27th 2007 issue of the New England Journal of Medicine contains a study that “does not support a causal association between early exposure to mercury from thimerosal-containing and immune globins and deficits in neuropsychological functioning…” (This study can be accessed at the second link below.) Despite the accumulating evidence against the link between vaccines and autism, it is likely that people will continue to ignore this scientific evidence in favor of a belief that a link exists.
Dietary interventions for developmental and learning disabilities have been controversial for decades. When a child presents with a metabolic disorder, it often follows that diet may be a critically important variable. Certain metabolic disorders, like phenylketonuria, are effectively managed by diet. Many different diets have been suggested as treatment for autism as well as for various other developmental disabilities and diseases. However, unless a child has a food allergy/intolerance or a verifiable metabolic condition it is unlikely that dietary changes will affect their disability at all. Currently (I'm confident a new, equally unfounded diet will emerge at some point in the future), the most popular diet promoted as a cure for autism involves restricting casein and gluten from the child’s diet. The unfounded assumption behind recommending that casein and gluten be restricted is that the processing of these substances causes many of the symptoms of autism. Beside the fact that most of the evidence provided as support for casein/gluten theory of autism comes from individuals involved in selling these products or diet-related advice, the lack of scientific acceptance of casein and gluten processing difficulties as a cause of autism is one good reason to be wary of this approach.
Though children with ASD seem no more likely to have irritable bowel-like gastrointestinal difficulties or food allergies than typically developing children, the fact is that both children with ASD and those who are typically developing can have this problem. It is also the case that children are more likely to have food allergies than adults. So food allergies are clearly an appropriate concern. In fact, at times they can involve severe reactions that are life threatening. Shortly after the food the child has an allergy to is ingested, symptoms (e.g., diarrhea, tingling/swelling in the mouth area, difficulty breathing, pronounced rashes especially on the face or torso) appear. Most children (including many children I've worked with and my daughter) outgrow their allergies although it is thought that allergies to tree nuts (and peanuts), fish, and shellfish are likely life-long allergies.
For nearly two decades I have worked with children with feeding difficulties with and without ASDs and one frequently encountered cause of a child’s feeding problem is food allergy. If a child has a documented food allergy then removing the allergen(s) from the child’s diet is one necessary component of resolving the problem. However, determining that the child has a food allergy is a critical first step. If a child is suspected of having an allergy because of symptoms, then there are two tests commonly accepted as valid means of diagnosing food allergy. These are the skin ***** and RAST (radioallergosorbent) tests. If the child does not show signs of allergy noted above or through these two tests, diet is not going to affect their behavior in the slightest.
So, why not restrict access to casein and gluten just to make sure you are doing everything you can for your child? First and foremost is the lack of scientific evidence that casein and gluten cause autism is concerning and the lack of evidence that GFCF diets have any impact on symptoms of autism. Blinded studies of dietary intervention suggest no benefit from the GFCF diet (and more clinical trials are due to end in the near future). Another reason to not restrict the diet of a child with an ASD is the fact that children with ASD are prone to selective eating (Ahearn et al., 2001). During our study of the eating habits of children with an ASD, my colleagues and I provided children with a variety of foods across six meals spread out over at least two weeks. Over half of the children we observed presented with some form of selective eating. Though we saw selectivity for various food groups, the food group that our selective eaters were most likely to prefer was starch (also the food group typically developing children are most likely to selectively accept). Gluten is a constituent of many starches and restricting access to this substance can lead to eliminating the only foods that a child regularly eats.
The course of action that I have followed as a clinician treating selective eating has been to attempt to expand the variety of foods a child eats. I’ve worked with children who ate only one food and would not eat unless that food was prepared in a specific manner (e.g., macaroni and cheese made with whole milk and butter served straight out of the pan). Going from such selective acceptance of food to eating other foods often takes quite a long time. The only situations in which I would recommend restricting access to food would be if the child had a documented food allergy or excessively consumed food. Several parents have reported to me that they have tried the GFCF diet and their child would not eat any of the foods presented to them. To be fair, I’ve also had a number of parents swear to me that this diet was very helpful but none of them answered yes when I asked them if the diet cured their child of autism. It is my opinion that children with an ASD will not benefit from dietary restrictions of any kind unless they also have a food allergy or intolerance. Furthermore, children who are selective eaters are likely to become more selective and may stop eating when their diet is radically restricted. Because children with ASDs are prone to selective eating it is probably a good idea to attempt to expand their diets rather than restrict them.
NECC Research Newsletter:
Have you looked at the possibility of tourettes? I know that it can involve noises as well as physical ticks. And I think that touretts can also be on a spectrum from mild to severe. If that is the cause then you may need to be approaching it from a different perspective. Has he been referred to a specialist that deals with tourettes? I don't think he would be doing it 'to annoy' anyone. Being compelled to make noises is going to make him stand out in the crowd, and as you know most children on the spectrum don't like being in the spotlight.
And the professional who suggested he was trying to 'annoy' you obviously had no understanding of autism at all.
There is always a 'reason' for the behaviour whether it is obvious to us or not.
Im not a doc but another mom, my son is 7 and has a complex tick eye and head, brought on by adderal last year we took him off it immediatly after noticing these ticks and they have never went away... 1 yr later.. we have been told a complex tick with add or adhd is a form of touretts, we are trying strattera and its not working yet it takes 8 weeks, so if this doesnt work we need a fast acting med for add but it makes ticks worse which i dont want to do... I hope you find your answer this is so stressfull... good luck ..Kerry
My six year old has tics, and obsessions. He also has the ADHD. We have seen a ped neurologist. He has him on Abilify 5 mg for the emotional behaviors and ADHD also zoloft for the anxiety and obsessions. He is doing better. It is very hard. I don't think the meds make the tics worse. However my son has been doing a repetitive toe walking and knuckle thing lately since he was sick six weeks ago. I think it is tied to him immune system and stress.
Part 2 of 2
On the matter of the vocal tick, I would start by looking for other opinions on the nature of this problem. It is possible that this behavior is not a tick as much as it is a vocal form of stereotypy. On the other hand, there may be post-nasal drip that your son is responding to and the throat-clearing/scratching might be an appropriate response. I would ask your pediatrician to help you rule out that there is significant post-nasal congestion or to seek an appropriate course of medical intervention (risperidol, abilify, etc. are not tailored to treat post-nasal drip). They would probably be able to help you determine this without the need for a specialist. If this behavior is truly a tick there are many courses of possible courses of action that do not involve medication. One treatment is referred to as habit reversal and a qualified behavior analyst might be the best person to direct this type of intervention. Finally, if this behavior is vocal stereotypy, there are many interventions (for example, response blocking and redirection, self-management, differential reinforcement of alternative responding) that have been found to be effective for treating stereotypy and a qualified behavior analyst would also likely be the best person to direct intervention. To find a qualified behavior analyst in your area, go the www.bacb.com and click on the consumer information link. There is a certificant registry that allows one to search by city, state or zip code.
Best of luck.