Aspergers/Autism/adhd, Diets & General Advice

My 13 year old son is an aspie. The first book I bought was The Oasis Guide to Asperger Syndrome. It was extremely helpful to me and I have referenced to it throughout the years. There is a website and support/forum for parents and kids. There is a host of information on this site. I would highly recommend it. Another book written by Tony Atwood, which I did not find quite as helpful, is another book you can look into. There are tons of additives in store bought foods and he could be allergic to dyes, gluten or have celiac disease, and if changing his diet helps solve the problem, then that would be awesome, but if that is the case, then he really isn't a true aspie.

I think Riley is right on target here.

If you need anything, feel free to PM.

M., kudos to you for electing to be an informed consumer of information!

I am/was a school psychologist and worked for many years with children on the Autism Spectrum and would suggest the following:
-Jenny McCarthy is not an doctor, nutritionist, neurologist or psychologist. Take her book for what it's worth. I read it b/c many of my clients' parents were reading it & it certainly gave them hope, but there is no way to verify her accuracy.
-ADHD and Asperger's are highly co-morbid, meaning that most kids with Asperger's also have ADHD. They can also be dually-diagnosed with OCD so don't be surprised if the two secondary diagnoses are swapped-out when he gets older. At such a young age, lots of symptoms overlap. A differential diagnosis that is considered accurate is typically established in second or third grade.
-Medications (or diets for that matter) do NOT cure spectrum conditions, they remediate some of the behavioral symptoms. Your son has been diagnosed with a condition that impacts his view of the world. That will not change as a result of a chemical adjustment. What may change is his ability to "let go" of his fixations with less stress, focus on relevant information for longer and relax long enough to attempt an interaction.
-Autism and the related conditions are NOT a virus, but are a collection of behavioral symptoms that when occuring in combination result in specific behavioral and language patterns (this is the definition of a syndrome)

I would suggest that you reach-out to the school if you have not already done so. Many schools have social groups that would be great for your son and they will provide him with any additional support he may needs as he gets older.

As for websites...
www.chadd.org This is a very comprehensive support system for families dealing with ADHD- not much on Asperger's
www.autismspeaks.org Has some good info as well on spectrum disorders, assessment and treatment

** Please don't rule-out medications when he gets older if the social anxiety piece becomes overwhelming. Get involved with a neurologist and maintain current assessments through a neuropsychologist if you can!**

http://childrenwithasd.proboards.com/index.cgi?
This is a community of parents with children who are all over the autism spectrum. Many of them will tell you that the GF/CF diet has been *helpful* but I don't think any would call it a "cure"

Hi M., I am not a professional, nor do I have a child on the spectrum or dx with anything beyond maybe strep throat from time to time.

I worked at a special needs pre-school for many years. I worked with many (many many) parents who were profoundly convinced diet was a HUGE factor, or the ONLY factor, or vaccinations were a HUGE or ONLY factor in their child's Diagnosis. I certainly could not disagree with them. As dramatically different as each child on the spectrum was, each child's PARENTS were very MORE diverse.

I found all the children I worked with fascinating and even MORE loveable than my own boring normal children (I know that sounds awful), I was always on line researching, bought a zillion books, could not WAIT to get to work to see what kind of day I would have with which child was my one on one.....I did not always agree with our schools policies, procedures, behavioral plans which started to wear on me more and more.

One year for Christmas, my guy bought me the book 'Ten Things Every Child With Autism Wishes You Knew', by Ellen Notbohm.

I had already read so many books written by docs and pros, this one was entirely different. Written by a mom with a child on the spectrum. I found it LIFE changing, I LOVED her philosophies, SO very different from the philosophies at my school.

Anyway, I shot my mouth off one too many times....disagreeing with the 'pros' who came up with the plans for my one on one (who was NOT showing improvement or progress of any kind, and who I loved like my own, and was convinced I knew the route to take with him, sigh). So I got fired! All I could think about was Oh My God, what's gonna happen to this poor child!

Anyway again, try everything, read everything, talk to everyone, eventually you will form your own opinions and theories and THAT'S what you go with for your own child.

Good luck, it's a very rich life with a child with these dxs, read the Ellen Notbohm book even if your child is entirely different than hers, and enjoy him!

My 13yr old son has PDD-NOS (he is on the spectrum), ADHD, sensory issues and Tourettes. He did a bit better on the GFCF diet (we tried it for about a year), but not SO much better that it was worth the hassle. It was expensive and any benefit HE got was far outweighed by the rest of the family's pretty major sacrifice. The best thing we did for him was to go see a naturopath and get him on a regimen of supplements and vitamins (DHA, D3, etc) and do a few rounds of neuromotion and neurointegration therapy in addition to finding the medication that works best for him. You'll find that what works for one child will do nothing for another. That's one of the hard things about dealing with Autism and ADHD - so much of it (including finding the right meds) is pure trial and error. You'll try a number of different diets, meds, behavior modification techniques, teaching styles, discipline tactics, etc before finding the right combination that brings out the best in YOUR son. We feel very lucky that our son is in a great place right now, but from the time he was 4 to about 8 were extremely difficult years for us. Definitely do the OT and social group...it may also help to have a psychologist or therapist for your son, someone to talk to that understands what HE'S going through. If you haven't already, get an IEP so the schools can provide what he needs to learn successfully. It's hard, but you'll do whatever you have to to help your son. And if you have questions, there are plenty of moms on this site who are going through or have already gone through what you're about to experience. I think we'd all agree that these diagnoses are not the end of the world and for the most part, our kids are pretty awesome individuals. I know my son is one of the most interesting people I know and I LOVE hanging out and talking with him because he REALLY thinks outside the box. His perspective of the world is so different, not bad, just different and I really look forward to the adult he'll one day become. Good luck!

My 8 year old has Autism and ADHD we have tried the gluten free diet but failed miserably when we couldn't stand the pasta. I have not tied any of the other diets. I know they take a lot of patience and trying different things. I would like to look into other options but I haven't done it yet. Good luck!

I do not think it fair to a child's body to completly uproot their diet all together in one foul swoop so I would not just all of a sudden change to a XYZ diet w/out consulting Professionals First. My son has Sensory Processing and working on the potential of being on the spectrum and or Adhd. Often times when they speak of "diet" they also include OT therepies and other activties as well not just food. Children with neurological disorders often need their over all nerves to have different kinds of attention then typical children. Before you change any diet I would speak to the person who made the diagnosis and whoever else you are pulling into your TEAM of experts, and this may include Occupational Therepist, Speech T, PshycoT, Develop T, Pedi, Your Parent Partner, Nanny or school teacher if applicable etc, to work on an all around Lifestyle Diet for your son that may include changes in food, activities, clothing types, specific toys etc these are all included in the "diet" changes. I do not know your child's age so it is difficult to say where you may want to start looking for support groups but you may want to contact your local ECI, early childood intervention, to see what support groups they know of in the area as a start.

My daughter is Asperger's and we've been GF/CF for 4 years and it's been life changing!! The jist of it seems to be they don't properly digest gluten . . . it floats around in their body causing havoc. Once it gets to their brain, it causes neuron's to "misfire" - messing with moods, and their actions. If you remove gluten (casin builds up and acts the same way) those neuron's start to fire normally. They say it can take 3 month to "detox" but we were lucky and noticed a difference in 6 weeks.

My daughter was a picky, picky eater and reluctant to change - right down to her food. So, I started one meal at a time. She ate oatmeal for breakfast so I replaced it with cream of rice - took her 4 days before she finally ate it, she did go to school without breakfast those days, but I knew she'd eat lunch (it was the same), once she ate the cream of rice, I worked on her lunch - one item at a time, mind you this kid ate the exact same lunch since Kindergarten and she was in 4th grade. Once we got lunches done, I started on our dinners. After 6 weeks, she said she noticed a difference and wanted to keep the diet - said she felt "happy" for no reason, something she'd never felt before. Her heartburn was gone, headaches were gone, started noticing mood stabilizing, less outburst, less crying fits - it was amazing. Also, once she was gluten free for a bit, she started eating more foods and was way less picky. We've been gluten free now for almost 4 years and she eats whatever I make now. We are also casin free - I tackled that right along with the gluten free. She was in therapy for the aspergers and the therapist said she no longer wanted to see her because she felt she was virtually "symptom" free. It's been wonderful.

Its is a lot more work to eat this way, and more pricey as we don't use prepackaged anything, but the benefits are way worth it. I'll also say, that I used to make special gf/cf meals for her, but kept contaminating her, so I gave up and we are all gf/cf (at home - I'm more lax with myself out and about if I don't have my daughter with me).

I hope that helps - if you want more info, let me know, i have an 8 page document I typed up for the courts for my daughter's father. I would also add that her pediatrician was not supportive, but I really didn't want to medicate. I had her in for her 13 yr check up and at the end of the appointment, the pediatrician asked why she was gluten free and when I said she had aspergers, she said she totally forgot because she's so "normal" now. (Excuse me for using the normal word, I don't believe anyone is "normal" :-)

Best of luck - D.

I can't speak to Aspergers, but our son has ADHD so I've done a ton of reading and a ton of talking with doctors about ADHD. There has been no conclusive evidence that dietary changes do anything for ADHD. As Riley notes below, if you see a change, most likely it's because of a misdiagnosis or your child had a food sensitivity issue unrelated to the ADHD. ADHD is a genetic brain disorder and there's nothing in food that will "connect the dots."

Be very careful about the information you get online. Jenny McCarthy has no medical background in treating autism; she just offers a parent's perspective. Frankly, there is a ton of misinformation online and a lot of stuff that will needlessly scare you. Go to the associations leading the cause of your son's conditions. For ADHD, it's a group called CHADD (chadd.org). There is also a magazine for families dealing with ADHD that's full of reliable information -- ADDitude (additudemag.com).

Most importantly, talk to the doctors. This is what they treat day-in, day-out and they have the medical training and expertise to guide you through it all. What do they say about dietary changes? Medication? If you have reservations about medication, as we all starting off do, ask questions. Tons of questions. Don't let websites dictate your son's treatment ... find great doctors who will guide you through the best treatment options.

Welcome to the world of the "spectrum" and always remember it is just that a spectrum of children with some shared characteristics but highly individual responses to the various therapies available. Here is my opinion, of all the therapies available, the diet is the easiest and cheapest. My son was diagnosed with "classic" autism (not regressive) at age two and put in the middle of the spectrum. We started a GF/GC diet almost immedietly - before state services. I first removed casein and he went from being in his own world with no language to having more than ten words two weeks later. He was still in his own world of stimming, but for me the change was immense, not a cure, but a truly different child. I then removed gluten and it seemed to have no effect. Fast forward 5 years and he now has casein in limited quantities. So, for me it made a difference, but I also believe it was part of the way his intestinal tract developed as an infant. I don't know if at 6.5 you would see any miracles by changing to a GF/GC diet, but changes in sugar intake, food colorings, etc. have also been perceived as affecting ADHD. My point is that you wil need to do some diet experiments to see if there is a relationship for your child.
Social groups and OT have also been life savers for me. I like the Jenny McCarthy for bringing the problem to light, but there are so many better sources. You should really consider joining a support group, especially one just for aspies, if available.
Things will continue to get better, but don't let this consume your life.
C.