I dislike saying my “autistic son” because autism doesn’t define Nathan. In fact, he’s choosing to define what autism means in his life. But technically, yes he is an “autistic child.”
If you’re new here, Nathan is my 12 year old son, who was diagnosed with high functioning autism last year. He’s a happy, generally out-going 12 year old kid who has a few quirks. He’s doing well in school. He’s in seventh grade now (I can’t even believe it!) and is still a straight A student, just like last year.
Life with a child with autism is always a journey and we’ve had our up’s and down’s just like other families. But I’m happy to report that Nathan has been doing incredibly well the past several months. That’s without medication too! (No judgment if your child uses medication. We all do what is best for our children!)
We’ve changed a number of things to help Nathan and he’s responded amazingly well. Almost miraculously.
Three Essential Changes That Could Change Your Autistic Child’s Life:
(Disclaimer: as always, remember that each child is different and you should always discuss with your child’s doctor before making any big decisions!)
Three years ago our family doctor had Nathan tested for a genetic mutation known as MTHFR. It’s estimated that some 40-60% of people have one or two MTHFR genes. And even farther, studies have shown that some 90% of autistic kids have it. Wow!
Nathan tested positive for TWO copies of MTHFR. This means that his body isn’t processing toxins well and he can’t tolerate folic acid. I’ll share more on MTHFR in another post (feel free to google in the meantime.)
For the past 3 years, under doctor’s orders, Nathan has taken methylfolate (a special B vitamin) and a special form of B12 every day. We’ve noticed a remarkable difference in Nathan within a few months of beginning this inexpensive vitamin regimen. He’s calmer, less likely to freak out, and more in control of his actions.
We’ve gradually changed Nathan’s diet over the past 3 years (before the autism diagnosis, back when he had the ADHD label), and he’s improved more and more with each step. The first thing we changed was to cut out dyes from his diet, particularly yellow dye #5, red dye #40, and blue dye #1. Once the dyes were removed, we noticed something interesting. Nathan generally did pretty well, but if he did eat something containing one or more dyes, his behavior would noticeably decline. It was crazy!
Next we cut out high fructose corn syrup and noticed a similar response.
More recently, we switched our whole family to a gluten free diet (as of August 1st) and Nathan’s improved even more. Our next step will be to switch to a dairy-free diet and move into a paleo lifestyle.
This is kind of a no-brainer when it comes to autistic kids, but it has helped Nathan so much. I used to hate schedules, but once I stopped trying to make a perfect schedule (which doesn’t exist), Nathan has done so much better. Of course we have flexibility as needed, but when Nathan understands what is going to happen and what is expected of him, he is much happier and life is smoother for our entire family.
Sometimes just simple guidelines are extremely helpful. Nathan used to rush home from school, quickly finish any homework, do a half-way rushed job on his after school chores, then beg to be allowed to play Minecraft. This school year, I set a firm rule. No Minecraft, tv, or computer after school. Nathan now understands that he will be allowed a limited period of Minecraft time after his dinner chores (and obviously any homework) are finished.
Life is much more peaceful this way. And Nathan clearly feels better too which is the main goal here.
I truly feel it’s a miracle that our autistic son is able to function like a “typical” kid 90% of the time now. There are still the occasional times when he gets frustrated and yells, but I can’t remember the last time he had an all-out scary tantrum!
These simple changes have given us our son back. No, these changes aren’t easy, especially the diet, but they’re 100% worth it to see our son thriving.
If you have an autistic child, I hope you will consider these tips for your family too.
What helps your child?
I’m working on a routine with my son right now, and it can be challenging since our days are so varied! I like your tips and hope they help!
Thanks, Krystal. Good luck!
Amy @ Oh So Savvy Mom says
Erika, I absolutely loved this post! what valuable tips and knowledge for the Autism community. I used to do early intervention therapy with kids with autism, and I still love to keep in touch with the community and keep up to date on the advances in research. I had no idea about that gene. Thanks for the info. I hope it will be of help to lots of parents out there. I pinned this too, in hopes that it will reach more parents.
Thank you so much, Amy!
Ellen Christian says
Diet is really important. Both my kids have ADHD and I found that eliminating food dyes really can make a difference.
Routine is very important for autistic kids. My kids both have ADHD, not autism, but they still thrive on routine.
Lori Felix says
My nephew is 11 years old and has autism. His parents put him on a gluten free diet last year and it has had a slight effect on his behaviors. Fortunately there’s been an increase in the gluten free food options over the past couple of years.
Alexandra Martinez says
Oh my gosh thank you so much for this! i have an autistic four year old and am always looking for ways to help him.
Jenna Russell says
Erika, have you heard of the Feinngold diet? My son, like yours, reacts to petroleum based food dyes but he also is sensitive to “natural” food dyes and preservatives. Its definitely worth having a look at the Feingold website.
Great info! Thanks for sharing – I have. 13 year old daughter with autism and will look into the b- b12 – great idea. I had no idea about the gene and the dyes– will definitely look at food options too. Thank you!!
You’re welcome, Darcy! Good luck!
Huge hugs, Erika! I needed this post today more than you know. Today was an especially rough day. I have recently been diagnosed with MTHFR and can’t get anyont to test my son. However, my OB said I can count on my autistic son having in and to get him on vitamins right away. I cried when I saw this post. You just validated all of my researching and scouring of the internet I have been doing to help my lil guy. Thank you.
I have done the meds and they have had horrible side effects on him. We will be trying your other suggestions as well.
Hugs back at you, Mande! We moms need to stick together. You are NOT alone!!!
One tip – you can get anyone tested for MTHFR using 23andme without a prescription. It’s a simple saliva DNA test. It’s around $100 (not covered by insurance), but you not only get MTHFR results, but you’ll get more genetic SNP info that can be very valuable in treating your son. Hang in there. You’re doing a great job!!
I’ve homeschooled my son for the last 4 years. He is also high functioning autistic. He is going into the 8th grade this year. My concern is school lunch. Do you pack his lunch? If so, do you have a post on the types of things you pack? Removing dye from the diet has been absolutely amazing. We go back and forth with HFCS, gluten and dairy. When they’re gone though, he does so much better.
I reared a son with autism who is now 28 years old. Many of the things we did for him as a child fell away when he became independent but have filtered back into his life choices since mid 20s – food being one of the most important.
8th grade is a difficult time to stand out by packing lunch from home. Strive to make what he eats similar to what his schoolmates will be eating. It’s easy to get the school menu and tailor your home menu to coincide with his lunches and snacks. You can easily make his food gluten/dairy/chemical free while it still looks like what his classmates are eating.
By this age your son with autism (notice the people first phrasing) probably has good awareness about how he feels when he gets the “wrong” food and will be watchful when he does eat food not provided by you. Keeping a learning dialog going is important for much more than the topic of foods as you probably know well (even 1600 miles apart JC and I keep up our dialog).
Good luck to all of you in your new adventure!
You mentioned that your son also takes a special form of B12. Does it have a name and does it also require a prescription like the methylfolate?
I’m also curious about the b12. Is it online purchased or a prescription?
Hi Tiffiny, you don’t need a prescription. This is the brand my son takes (affiliate link): http://amzn.to/2cQerB5 . My daughter and I have a slightly different version of MTHFR and take this one form of B12: http://amzn.to/2dpGtY8
shannon Krieger says
My son is turning 13 tomorrow and was diagnosed HFA last week after years of frustration and misdiagnosis. I am just starting to learn about everything here and I came across your article. I have no supports and no one to guide me. I feel like I’m loosing my son quickly day by day. I just printed your article here and I’m starting with this. I’m afraid and scared and angry.
I need someone to talk to about this that can relate to me.