Diagnosis “AUTISM”: A Mother's Advice

My youngest daughter, Raigan, was diagnosed with autism when she was 23 months of age.  After hearing the diagnosis, I cried for days.  I wanted to hear that she had an infection or a medical condition that was curable, get a prescription from the doctor, and in ten days she’d be all better.  Instead, I heard that dreaded word, “Autism,” that made me cringe.  Hearing your child has autism is not what any parent wants to hear and in the beginning, there can be more questions than answers.  There is still so much that doctors and therapists don’t know.  The question, “What can I do to help my child have some semblance of a normal life?” becomes the topic of everyday thought and conversation.

Raigan was born in November 2003.  She still has no consistent language - Raigan lost her words after receiving a round of vaccines at 17 months of age.  And, in regards to what I believe caused Raigan’s autism – I believe there are two main contributing factors.  First, Raigan received vaccinations too early in life when her body was too weak to process them. And secondly, the constant need for antibiotics due to recurring ear infections.  She had already had her first ear infection at one month of age before her first round of vaccinations.  The recurrent use of antibiotics can damage the gut lining which may lead to malabsorption of nutrients, yeast overgrowth, and other negative side effects.  In regards to vaccines, they’re not a bad thing, they have a great purpose, but “one size does NOT fit all.”  I believe children receive too many vaccinations, too early in life and a child who shows early signs of a weak immune system (like Raigan) is especially at risk.  If you have a child who is consistently ill, wait until your child’s immune system is stronger.  Point:  Healthy child = healthy response.  Sick child = sick response. 

The best advice for parents to follow in regards to vaccinations is: READ.  One of the most informative books a parent can read about vaccines is What Your Doctor May Not Tell You About Children’s Vaccinations written by Dr. Stephanie Cave and Deborah Mitchell.  Don’t take a shot in the dark. Study what precautions can be taken to minimize the risk of reactions to vaccinations which include, but are not limited to:  Educate yourself before your child is vaccinated; never vaccinate a sick child; only vaccinate a healthy child that is free of antibiotics (It takes approximately 2 months for a person’s body to rid itself of antibiotics); request single dose vials - they contain less to no preservatives which may be harmful to the body; if you have a child who is consistently ill, delay giving him vaccinations until his body and immune system is stronger (a child’s immune system is not fully developed until around age three); and last, remember that too much of a good thing is not a good thing – meaning, break them up – don’t allow your pediatrician to give too many vaccinations at one time, especially if your child is not feeling up to par.  It is safest to allow your child to be given no more than 1 to 2 vaccinations per visit and come back at a later date if more are needed.  If your pediatrician doesn’t want to delay when you believe it’s in the best interest of your child to delay vaccinations, always go with your gut instinct and find a new pediatrician – one who listens and responds to your concerns.   Don’t be pushed into making a decision to vaccinate – it is ultimately your right to choose if and when to vaccinate your child.  Never be afraid to put your foot down when it comes to the well-being and health of your child because no one knows your child better than you do – remember that always. 

Parents - I encourage you to read all that you can.  There is help out there and the diagnosis of Autism is no longer a death sentence.  If your child has been diagnosed with a form of Autism Spectrum Disorder (ASD), there are many things you can do to help your child, but it takes research, patience and perseverance.  Go online, search the web, find the right pediatrician (one who’s willing to go the distance and understand the underlying health of your child, not one who says “let’s medicate” before they look for possible underlying causes of your child’s symptoms and behaviors), go to the bookstore for resources, then begin to put into practice what you learn.  From a gluten free/casein free diet, to the right vitamin supplements and minerals, to cod liver oil, to mild hyperbaric oxygen therapy (HBOT), to chelation – there are so many things now available to help recover our precious children.  And, often, it’s not just one of these, but a combination of many of these things accompanied with physical, occupational, speech, chiropractic adjustment, acupuncture, and/or music therapy that often makes the most difference with ASD children.   

By age two, Raigan was completely unresponsive to her name.  She looked through us, not at us.  Her muscle tone was very weak (sometimes a symptom of autism, sometimes a symptom of heavy metal poisoning as well).  She had had multiple ear infections beginning very early in life - a common denominator among many autistic children.  About 75% of autistic children suffered from chronic ear infections during infancy and early-childhood.  And, I felt Raigan had serious allergy problems, but we didn’t know how or what to eliminate from her environment or from her diet for which she was reacting.  There were days when she would scratch at her eyes, face and head so intensely, I feared she would physically hurt herself.  I had visited more than one allergist with the only outcome being high doses of allergy medications, yet I was given no answers as to what was causing her allergy symptoms. 

In February 2006, we switched to a gluten free/casein free (GF/CF) diet.  And, a warning to parents, withdrawal symptoms from gluten and casein can be significant in our children.  I’ve talked to parents who said they stopped the diet because their child regressed.  Unfortunately, these children were not experiencing true regression, they were experiencing withdrawals from gluten and casein which to our children’s bodies is a drug.  Most autistic children lack the enzymes in their gut to properly break down and digest gluten (wheat, barley, oat & rye) and casein (milk & dairy).  Studies have shown that about 65% of autistic children are sensitive to gluten and 90% of autistic children are sensitive to casein.  Also, most people who are sensitive to milk are also sensitive to soy. Gluten and casein can cause an opium-like affect on the brains of autistic children causing brain fog and leaving them unable to concentrate or focus.  Parents must fully commit to this diet and give it time.  It can take as much as 6 months for the body to fully rid itself of gluten while casein is purged from the body in about 3 days.  When we removed gluten and casein from Raigan’s diet, she experienced horrible withdrawal symptoms for close to 2 months, but when the fog lifted, she saw us for the first time in months.  I cannot tell you how awesome it was to have my child look AT me again and recognize me – that joy still brings tears to my eyes.  Prior to the diet change, Raigan’s stools were loose to wet - always.  After about 3 days on the diet, her stools became more normal, her ability to focus improved, her constant runny nose stopped constantly running and her eczema completely went away.  Gluten and casein intolerance as well as other food sensitivities can cause diarrhea, constipation, both or neither, as well as skin conditions like eczema and changes in behavior.  Point: It’s worth researching food sensitivities. 

Unfortunately, there has been no one therapy or dietary intervention that has given us that miracle cure.  Like most autistic children, improvements have come slowly from the use of many interventions - the GF/CF diet, specific vitamin and mineral supplements, and a variety of therapies mentioned above accompanied with education from special schools that are trained to teach autistic children using Applied Behavior Analysis (ABA) or other teaching techniques known to be successful in autistic children.  It’s finding the right doctor - a Doctor who is familiar with autistic children, who will inform you, guide you, and run the appropriate tests on your child to give you specific answers about the underlying health of your child and how to improve his or her health (a child who is physically ill whether they appear to be or not, doesn't feel much like learning, participating or focusing). 

In March of 2006, after our initial consultation with a doctor who specialized in treating children on the Autism Spectrum, we got the results from a 90-food sensitivity test to discover that Raigan had many food allergies.  Expanding on the GF/CF diet, we eliminated those additional foods from her diet and, yet again, she showed improvement.  In regards to the GF/CF diet and other food allergies, the most informative and helpful book I have read is Special Diets for Special Kids written by Dr. Lisa Lewis.  If you have a child with food allergies, I believe this book is a must-read.  This book not only has recipes to help you get started, but information on hidden ingredients, yeast and bacteria in the stomach that can be a major problem for autistic children, and so much more.  I can easily say that of all the therapies and interventions we’ve tried with Raigan, changing her diet brought about the most dramatic change in her general health and her ability to focus.  And, a note of encouragement to parents, Raigan (as many autistic children) had a very limited diet, she was frail and thin, and food texture was and is a huge issue with her.  She had not gained a single pound in weight and had no change in size for a full year.  As noted above, we changed her diet in March 2006.  She began to gain weight in June and by October of that same year had gained 6 pounds, 2 dress sizes and 1 shoe size.  And, her ear infections completely ceased.

After the diet change and the introduction of several vitamin and mineral supplements, Raigan’s progress began to level off.  We began mild hyperbaric oxygen therapy in May 2006 with positive results.  After one visit in the hyperbaric chamber, Raigan stared directly at me as we left the clinic that day and smiled at me in a way that I hadn't seen her smile in months.  As we walked to our car, I choked back tears feeling a renewed sense of hope in my heart – I was slowly getting my daughter back.  Oxygen therapy helped Raigan’s focus as well as her sleep patterns which had been horrible (often sleeping only 2 to 4 hours a night, no naps).  Sleep disturbance is common in children with autism, but there are many natural supplements that can help with sleep in addition to the sleep benefit we gained through oxygen therapy.

We continue to research and try new interventions with Raigan – some work and some don’t, but we give each intervention a genuine effort.  Besides a strict diet, oxygen therapy, ABA therapy and multiple supplements, we started Raigan in a variety of other therapies offered by our state’s Early Steps Program including physical, speech, occupational and early intervention therapy.  Everything contributed to Raigan’s improvement.  She has come a long way since those early days, in part because we started interventions early and stuck to them, we continue to research and try new things to help  her, and we found a pediatrician who is a team player – one who works together with us to guide progress.  Is Raigan cured?  No.  But, we now have a girl who can focus and learn – not the shell of a girl who was lost in the abyss of autism and unable to respond to any stimuli at all.

Don’t Wait!  That’s the best advice.  Autism doesn't improve or go away on its own.  Children don’t outgrow it without INTERVENTION, and the earlier you act, often the quicker your child will respond and the possibility of permanent damage may be avoided.  Making the necessary changes in your child’s diet, the multitude of supplements, the therapies – it can all be overwhelming at first, but it gets easier with each passing day, week, month, year.  And, the reward of seeing the light bulb come back on inside your child’s mind is priceless.  Also, because the cost of treatment can add up quickly, there is financial help available which varies by state.  INQUIRE.  Go to or call your Department of Health and ask if they offer programs for children with autism or other developmental delays.  Apply for Supplemental Security Income (SSI) which is offered to families with children who have documented disabilities.  Go on-line to the different Autism societies for help and guidance.  You are not alone in this battle.    

If your child has been diagnosed with ASD, Pervasive Developmental Disorder (PDD)/Not Otherwise Specified (NOS), ADHD, Asperger’s, or you fear your child may be affected by one of these disorders, I strongly believe two must-reads are Children with Starving Brains:  A Medical Treatment Guide for Autism Spectrum Disorder by Jaquelyn McCandless, MD, and Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies, by Kenneth Bock, MD.   Find an open-minded doctor that will help you, not hinder you – Don’t settle for less because your child, my child, deserves a fighting chance.