ASD/SPD/OMG/BBQ

This should be a Little Joy Map post, but my brain in consumed with another topic, so that will have to go up tomorrow.

August continues to perplex me.

We are at twenty months and still no words.

I’ve read one million descriptions of Autism that don’t feel quite right–he definitely notices mom and dad coming and going. He does great in crowds and with strangers. He can be very charming when he’s out with me. He doesn’t complain if his routine is changed. He doesn’t have melt downs, but instead has very appropriate tantrums–right down to following me if I ignore him. He can, however, be spacey and aloof. He can disappear into his own world.

He still has a LOT of sensory stuff going on–he likes to run around, to rock in the rocking chair. to bounce on the couch and on beds. He’ll spin if he gets excited. It doesen’t really seem to get in the way of anything except food–he hates to touch food, so that limits his diet. But he doesn’t have issues with tags in clothes or rough-textured garments. I bought him a nice pair of shoes and he’s accepted them with no problems.

He could end up with a PDD NOS diagnosis, which seems to be a catch-all for kids who have something going on, but they’re not sure what, but that’s an annoying diagnosis. If it’s something, shouldn’t it have a name?

The one constant in all of this is that his diet–specifically gluten–seems to be key. The Friday before Mardi Gras he buried his face in a mini King Cake his brother brought home from school and for days afterward he had dark circles under his eye and was difficult to reach. There was WAY more spinny/flappy behavior and way less eye contact, giggles, and interaction. He spent a lot of time picking up little bits of paper and eating them. His speech therapist took one look at him on Monday, three days after the King Cake, and she knew he’d eaten some gluten.

having too much fun with iPhone apps

having too much fun with iPhone apps

As Mardi Gras week passed, he improved daily. I discovered some of his fruit /quinoa packets were produced in a facility that also handles wheat, so I removed that from his diet as well.

This weekend he was amazing–he responded to his name regularly. He was more affectionate than usual, and he’s usually pretty affectionate. He made incredible eye contact and on several occasion he responded to what I was saying in a way that made it clear he knew what I meant. He’s babbling more, picking up new toys, and today I didn’t see him put one single piece of paper in his mouth. He’s still bouncy and occasionally spinny, but as I’ve said before, those aren’t the behaviors that worry me.

I’m kind of at a loss. I know gluten needs to be removed from my house completely, and that makes me a little nervous since Charlie subsists almost entirely on wheat products. Is this an allergy? A raging coincidence? The speech therapist says she’s never seen anything like it, and I’m at a loss.

Don't worry--I did not let him get up on the table.

Don’t worry–I did not let him get up on the table.

 

 

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Comments

  1. How are his imitation skills and joint attention? He may not fit PDD-NOS, and it could just be early signs of ADHD (which overlaps with SPD). He sounds so social from what you describe. Do you have access to an OT/Sensory gym?

    • Imitation is sucky, but both the twins aren’t good at it. They copy each other, but not me or other adults. Joint attention is good–he will definitely look at you during an activity. He’ll even look at a therapist and then at me and then back to the activity at hand.

      I don’t think we have an OT/Sensory gym. But maybe I should look for some kind of kiddie gymnastics or something. I was a bouncy kid and I loved that stuff.

  2. Have you considered Celiac’s disease? It’s an allergy to wheat that can have pretty profound effects on the body. Also, Missy at the blog It’sAlmostNapTime.blogspot.com blogs about the Feingold diet and how her youngest son’s behavior was hugely affected by the foods he was eating. I hope you figure it out, it must be frustrating to not know for sure what is going on.

    • I asked the pediatrician about Celiac and she was pretty dismissive, so I’m not sure. I guess it doesn’t matter if I’m removing gluten one way or the other.

      I will definitely check out Missy’s blog–you’re not the first person to mention the Feingold diet.

  3. Kids with autism often benifet from a gluten free diet. It seems like August does and a full fleedged GF diet would possibly do wonders for him. For resources try ANDI(Autism Network for Dietary Intervention) and Living Without Magizine.(I am sorry if it seems I am saying he has autism and its not true)

    • Thank you so much for the recommendation and no need to apologize! He may have autism, he may not. I’m still trying to figure him out!

  4. Im reaching… maybe. Have you looked into Childhood Apraxia of Speech? Seems some kiddos with Apraxia (many actually) also have dietary and sensory issues among other “quirky” things unique to them.

    • This is really interesting, Mo! The speech therapist is convinced that Louis has Apraxia of Speech. It’s harder to tell with August where the speech hang-up is since he gets frustrated more quickly than Louis. We’re assuming he doesn’t want to talk or has no interest, but maybe he’s having issues more like Louis? Who knows.

  5. I wish I had at least a shred information for because I bet the not knowing can be so frustrating. I have no knowledge in this area. Keep working that gluten angle. I am curious–will your whole family eat gluten-free? What kinds of things can you eat? Do you have to look up bizarre recipes? Is there one for gluten-free king cake? Is the menu hard to implement? Where do you shop? My kids eat frozen chicken nuggets for 75% of their meals so I am really interested to see how you do it, so maybe I can copy. Because we are just that terrible with our diet.

    • Well, just gluten free isn’t that hard. I can get snacks at any grocery store including Walmart. The only hard part is the bread. I order a case of it online on Amazon and they ship it to my door. I just keep it in the freezer until I need it.

      The whole thing has gotten me looking for a variety of diet ideas, though, since there seems to be a general consensus that people feel better when they’re eating certain foods. Since I started I’ve made my own bread and yogurt, and have even made pizza on a crust made of cheese and cauliflower. My next experiment will be trying to make my own almond milk.

  6. I hope you can figure out what’s up with him. They’re such cute boys :) Very special group you have there!

    • Well, thank you Addie! I do think I’ve at least figured out part of the puzzle–gluten is definitely not August’s friend. I’m going to continue to fiddle with some of the other big food triggers–stuff like corn and soy–to see if there are other things that seem to effect him.

  7. A very wise mom who has a kid on the spectrum once told me “if you’ve met one kid with autism…. you’ve met one kid with autism.” And it is so very, very, very, true (not saying that August has autism at all, but it is just SO hard to compare to other kids that have autism).

    I’m currently doing my masters of OT, and in the midst of a pediatrics placement. Some kids really do just have sensory issues with nothing else going on. And just because they are sensitive to certain things, doesn’t mean they are sensitive to everything. They like some textures but hate others, some love certain smells but can’t stand others – just the way the cookie crumbles. They all have different thresholds for things. I’d definitely recommend talking to an OT about sensory regulation if you have concerns about it.

    It’s SO hard to tell at 20 months what is going on. In the summers I work at an outdoor education facility for kids with autism. We get quite a few two year olds and I have a hard time most of the time telling the difference between autism and a two year old just being a two year old.

    {And if it makes you feel any better, if all of this sensory processing stuff was more of a known thing when I was younger, there is not a doubt in my mind that I’d have a diagnosis of some kind! Tags on my clothing and cutting my toenails were the most painful things in the world to me and I was such a sensory seeker (still am!). I’m big into rock climbing now – I mostly like to climb up because I love the sensation of going back down quickly! – yet I’m a normal, well adjusted 23 year old. There is hope! But I still don’t like cutting my nails :)}

    • I have heard that bit of wisdom before and I thank you for reminding me of it. With August, I think the sensory stuff is there, but since he’s more of a seeker, it doesn’t give him much trouble. He just like to be moving, and whatnot. Without gluten, I think he’s good. When he ingests, gluten, all that stuff is magnified, and he acts very foggy. So I guess we’ll see if eliminating gluten permanently helps him.

  8. I know the thought of going gluten-free feels so HUGE! But if you know that is a trigger, then you have a lot more than most parents have to start on. I have a 4 year old with a lot of disruptive behavior/ADHD/SPD symptoms and his twin with ADD symptoms. We have been on the Feingold Diet for almost a year. It has been a good start and he has shown some improvement, but we still have a long way to go. I have been dismissing the thought of going gluten-free for months now, mostly because I do NOT love to cook. But, having learned how to eat with a Feingold diet, it may not be as bad as I am imagining.

  9. Wouldn’t it be nice if you could just snap your fingers and know what’s up? ;) I think you’re ahead of the game just knowing to change his diet. I do hope you can get some answers. Your such a good Mom for being on the ball. xo

  10. I don’t really have any insight to spectrum disorders, but I am familiar with speech delays. Elena didn’t speak until she was 30 months. We started signing with her at 8 months to communicate (she was also tested for deafness, and her hearing is normal). She has CP. Not sure about August’s interest in sign language/attention span, but if just a few signs help communicate (eat, more, drink, hurt–that was a big one in our house) that could be worth it.
    And, as an aside…if you think gluten is a major player in August’s diet and his pediatrician doesn’t–or doesn’t take you seriously, maybe you need a different doctor? No one is clued in to his behavior better than you!

  11. My 10-year-old has autism. He is non-verbal (apraxia) which can occur with ASD. He was born with a complete bi-lateral cleft lip and a complete bi-lateral cleft palate. He has always been a picky eater (adopted at 27-months and I don’t know the eating history). It was always assumed that the picky eating was due to the autism sensory issues. Almost 3 years ago I had him evaluated so he could begin feeding therapy. Turns out that he had weak jaw, lips, tongue, etc. He also didn’t know how to chew. These issues could be related to austim, cleft, and/or orphanage life with a cleft. The OT told me that kids who can’t chew instinctively will only eat what they know they won’t choke on.

    Long-story-short, he has been in therapy for close to 3 years now. He has made major strides. He is trying lots of new foods, it getting some word approximations out, and on very rare occasions a few words. There is more strengthing that needs to be done and he doesn’t have any tongue control.

    The place where he gets therapy is for kids. They have all the equipment to deal with sensory issues. For example you will see a little 2-year-old on a platform swing working on speech. It is a place where kids have fun and I don’t feel like a therapy mom.

  12. He sounds a lot like my 6 year old did at 2.5. I couldn’t imagine she had autism because she was quite social and did seek me out a lot and referenced me for comfort now and then. She would also have good and bad days. She was diagnosed with severe autism at 2.5, started talking at 4 yrs old and now today at 6 had a 5 hr play date with a (typical) friend where they did not stop pretending and playing the whole time! She does still have language issues, but the combination of biomedical therapy and developmental therapy has totally turned things around for her. She is a happy, outgoing 6 yr old who attends programs in the community with no support, has lots of friends, jokes, pretends and is generally a super easy and awesome kid.
    If August does turn out to have autism (or even if he doesn’t) don’t believe for a second that there are no treatment options out there. Each kid is different and if you find what he trigger is that is causing his autism it can often be turned around. Looks like you’ve already found one – diet. Luckily there are lots of great gluten free options out there now… Probably even lots that Charlie would like!

  13. It sounds like a sensory processing thing, compounded seriously by gluten intake. Did you read this article
    http://www.anchoragepress.com/news/the-gluten-made-her-do-it-how-going-gluten-free/article_39e2478e-4585-11e2-a80c-0019bb2963f4.html There’s also an article on the NY Times website this week about the impact of going gluten free. I think you need a REALLY good developmental pediatrician to do an eval. What state are you guys in? Anywhere near RI? Have you tried sign language at all?

    PDD is going away with the next DSM update, so he may never get that dx.

  14. http://blog.mamaslittlemonkeys.com/2013/02/celiac-and-autism.html

    She reads your blog too, but I think you’ll find this interesting. My 6 year old doesn’t have autism, but going gluten-free helped him to feel less like he was thinking in a fog all the time.

    • Oh yeah! Amy shared that article on FB as wel–it is very interesting. We are definitely less foggy without the gluten at my house. I joke that going gluten free has made August understand English!

  15. You are spot on about PDD-NOS and while it sucks, it allows your little man to get services while he grows and until he is able to complete some of the more complicated tests and diagnostic tools.

    • Well, it sucks a lot less than some of the other potential diagnoses, and honestly I’m pretty well-versed in special needs land.

      I will be keeping him away from gluten, however, since that definitely seems to compound the problem.