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Autism Diagnosis Waiting
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Autism Diagnosis Waiting

We are waiting until March until we can get in to see a developmental pediatrician.  Our daughter has a lot of symptoms/signs of autism/PDD, and her three therapists through the state's 0 to 3 program and her pediatrician highly suspect autism.  So we are waiting currently for a diagnosis through the specialist but are going through therapies for the various delays she has in communication, social, cognitive (language related), and sensory issues.  

There are diets out there, specifically the casein/gluten free diet.  Since we don't have a diagnosis, should we wait to cut these things out?  Or should we eliminate these foods now since it might help and it's better not to lose months at this early age?  Our daughter is 26 months old.  Our daughter has already benefited from some sensory therapies, and we have already seen improvements.  But, the eye contact is still lacking, though it is marginally better than what it was a month ago.

Her symptoms/signs are lack of language (both receptive and expressive), hand flapping, toe walking (though she no longer seems to do that in the last month), sensory issues, little to no eye contact, doesn't respond to her name yet when she hears a sound she likes like an airplane flying overhead she will respond to that, she does not point, won't look at something if you point at it, little to no joint communication, and problems socializing/approaching/engaging with people.  There are other symptoms, but not sure what is normal for a 2 year old and what isn't, like the tantrums, though the last few weeks with some of the sensory therapies the occupational therapist has shown us, her tantrums have lessened, her transitioning between activities has improved and she is tolerating more sensory things like having her hair washed and laying down on her back for a diaper change.  I forget the name of the therapy, but the occupational therapist said it helps autistic children or those with sensory issues, and involves brushing her every 2 hours with a special brush and joint compression as well as rolling her up in blankets and bouncing on balls among other things.  I'm also hoping that if the therapists can resolve a lot of these issues, maybe she will avoid a diagnosis of autism.  I'm not sure if stuff can be cured or not.

So, I guess the big question is, the diet issue.  Would it help some of the symptoms/delays my daughter has at 26 months?  Or is it a bunch of crock that has come out since Jenny McCarthy's book has come out.  My daughter does not have seizures and does not have gastrointestinal problems.  She also has quite a healthy immune system.  Is there any way to test if she has sensitivities to the milk, wheat?  If there is, can I ask her pediatrician to schedule an appointment and test her for these sensitivities?  I will not change her diet unless I get the go ahead from a doctor first, and am not sure what to ask her pediatrician to do.  I am skeptical about all this diet stuff to begin with, but if it works, I don't want to ignore it.  

What other things should I be asking her three therapists about?  She has therapists in speech, developmental, and occupational for 3 hours per week at the moment (it might be upped to 4, with an extra hour of speech depending on how she progresses over next couple months).  I was told if she does get a diagnosis of autism, we will probably get more hours of therapy per week and also get added a psychologist/psychiatrist (can't remember which one they said).  Should she be seen by a nutritionist?  I give her Flintstones vitamins and she eats pretty healthily, lots of fruits and vegetables and chicken and fish.  She is a slightly picky eater which is normal for a 2 year old, and refuses stuff like any type of red meat, breads, french fries and white potatoes, but it's probably better she's not eating some of that anyways.  We also try to do homemade stuff for her and for us, but I haven't gone organic.  I'm just against prepackaged foods with all that chemical stuff and preservatives which I have allergies/sensitivities to myself that I don't want it in my daughter's body either.  

Thank you in advance.

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You certainly have many questions and I hope that you get some sound guidance quickly from the specialist screening your daughter for autism.  First and foremost, there is sound evidence about effective intervention for autism.  The only empirically-validated, effective intervention is teaching the child diagnosed with an autism spectrum disorder the skills they need to function independently using the tools of applied behavior analysis. Early intensive behavioral intervention has been shown to produce marked changes in the skill deficits and problem behavior associated with autism.  Some children have been noted to lose their diagnosis following a period of individualized instruction.

In terms of dietary interventions, there is no sound emprical evidence that they are effective.  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.  Feingold (1975) first proposed that eliminating certain substances like preservatives would result in a child with attentional problems, becoming more focused and less hyperactive.  These claims did not turn out to be valid for 95% of the children treated with diet (NIH, 1996) and those who were helped tended to have identifiable food allergies.  Evidence suggests that ADHD is a neurological condition but it is a complex disorder with little solid information about its cause.  We do know that ADHD is unlikely to be caused by food allergies, excessive sugar intake, or other variables that do not affect an individual’s neurological make-up (NIH, 1996).  
Unless a child has a food allergy/intolerance or metabolic condition it is unlikely that dietary changes will affect their disability.  Some have said that vaccines damage the gut and leads to gut problems, however, Taylor and his colleagues (2002) in a study with nearly 500 children with an autistic spectrum disorder (ASD) found no relation between the MMR and bowel problems. Looking specifically at gut problems in persons with autism, Black, Kaye and Jick (2002) found that children with ASD were no more likely to have an irritable bowel-like gastrointestinal problem than their age-matched peers. These studies strongly indicate that there is no link between the gut and autism.  
Although we are hopeful that empirically validated biological interventions can be developed to treat or perhaps prevent ASDs, it is more likely that the nature of successful therapy will not target the gastrointestinal system.
Nonetheless, it is still unknown whether a dietary intervention could treat autism.  Currently, 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.  
Both typically developing children and children with ASDs can have food allergies.  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.  Food allergies occur because the body develops antibodies specific to the allergen in the offending food.  The next time that this substance is ingested, the antibodies then trigger the release of histamine and an allergic reaction occurs.  Most children with a significant food allergy appear sickly.  They have symptoms that are typical of an allergic reaction, may vomit frequently, and often have abnormal bowel movements.  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 outgrow their allergies although it is thought that allergies to nuts (and peanuts), fish, and shellfish are likely life-long allergies.  
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.  So long as the allergic reaction is not severe, these tests can then combined with information gathered by alternately exposing or restricting access to the suspected allergen and determining whether symptoms respectively appear and dissipate to confirm test results.  For the child with a food allergy, the benefit of removing the allergen will be apparent in that the overt symptoms caused by ingestion of the offending substance will dissipate but if the child has a disability as well, the disability will persist.  The child who is no longer in discomfort will also likely be more receptive to instruction and have a more positive affect.
So, why not restrict access to casein and gluten just to make sure you are doing everything you can for your child?  First, the lack of scientific evidence that casein and gluten cause autism is concerning.  This combined with the evidence that gastrointestinal (GI) difficulties and autism are not linked, should cause you to question the plausibility of dietary intervention for this disorder.  Then again, most significant in my mind 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.  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 casein/gluten-free 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.

References for this post can be found at www.behavior.org/autism
2 Comments
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Thank you, thank you, thank you.  The behavior intervention won't happen until we have a diagnosis, but right now we are getting sensory integration therapy, which is helping immensely. In three weeks, we are seeing drastic improvements in her behavior, transitioning in activities, and even just this past few days now starting to see improvements in eye contact.  March seems like a long time off, being a parent, but with knowing what to expect, what to ask, what to ask the therapists and pediatrician about, it is really helpful and will help give me patience and endurance durign this period of waiting.  Thank you again for your very lengthy response.  It was very, very helpful, very reassuring.  Thank you especially for the web site, to get accurate information about the behaviorally therapies.  
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