Autism from a Father's Point of View

The common, not so common, issues

Written on October 18, 2011 by Stuart Duncan

Filed Under: Autism

One of the problems I often encounter when discussion Autism with someone that does not know much about Autism is overcoming their need to relate.

Which sounds really odd, doesn’t it?

The Problem

Here’s the problem: for every sign of Autism that I explain, the response is often “but a lot of kids do that”.

And when that happens, you kind of have to go…  ”yeah… a lot of kids do do that, but not like this and not with the combination of all of the other things my child does.”

Here’s a quick laundry list of Autism symptoms, off the top of my head, where “a lot of kids do that”:

• meltdowns
• not listening/ignoring
• get aggressive
• get bullied
• be shy
• picky eating
• have trouble sleeping at night
• speaking delayed
• miss milestones
• be repetitive
• need routine
• wander off/elope
• refuse to look you in the eye
• be brilliant

The list goes on and on… and when your child is having an issue with one of those things and you mention it to someone, often times the response is “yeah but a lot of kids do that.”

Understanding

This is why the DSM tends to combine signs, meaning that your child has to have several signs and meet several areas of criteria in order to qualify for an Autism diagnosis.

The truth is, they’re not wrong. A lot of kids do that!

Here’s the thing… most kids go through phases, most kids don’t do these things to the same extent or severity and most kids don’t do many of these things all at the same time… making it a fully quantifiable disability.

And that is what is so maddening when someone responds to me with “but a lot of kids do that”.

It’s a struggle to admit that they’re not wrong and yet they’re so far off base at the same time… how do you explain that without upsetting them? Especially those stubborn family members that are so certain they’ve “been there, done that” and that you’re just young and “finding out what it’s like”.

See, I can see you sneering right now because we all have those family members.

In these cases, it’s best to remember the 3 key points that make your experience different from theirs:

1. Most kids go through phases. Autism is for life.
2. Most kids do these things to varying degrees. Autism tends to be all or nothing.. to the extreme.
3. Most kids do these things one or two at a time. Autism means that several or even all of these signs are present.

If you really want to throw it in their face, you can add a fourth point… that their children were just brats and yours has an actual disability. This often results in a discussion about how much medical experts know and don’t know vs now and then, how they just have to give everything a name these days and so on… so it may be best left out.

Chances are, if you’re like me, it will really bug you every time you hear “but a lot of kids do that” but you have to remember that they mean well. They’re either trying to relate what you’re saying to what they know or they’re just trying to show their support, in their own weird way. That they “understand” what you’re saying because they’ve seen it.

Then you can hand them the gluten free food and/or therapy bills and say “consider yourself lucky that not a lot of kids do that”.

He eats solid food!

Written on July 13, 2011 by Stuart Duncan

Filed Under: Autism

Cameron is just about to turn 6, in 15 more sleeps (as he calls it), but has only just started to actually eat solid food.

Well, that’s a bit misleading.. the truth is, he’s eaten pasta and potatoes and rice and such for a very long time but his potatoes were always mashed, pasta always soft… it’s been a constant ordeal at meal time.

For over 5 years

Any time we tried to get meat into him, we had to blend it or pick it apart into tiny little pieces that could be hidden in his potatoes. Like, tiny tiny.

Here we had his 3 year old brother eating pieces of pork chops, steaks, chicken… his potatoes were in pieces…. and yet his older brother was still getting a bowl of slop.

If you’ve ever questioned if autistic people could have texture issues with their food, we had living proof.

How did we change it?

Truth is, we didn’t. He did.

He decided when he was ready. We started slow at first, gave him pieces of potatoes instead of mashed… and for a long time, he wouldn’t touch it. Finally one day, he did.

After that, we started giving him small pieces of chicken… like, very little cubes. To our surprise, he tried them. He didn’t eat them, but he tried them.

We never stopped giving him those pieces though. We always presented him with the options, never being upset if he didn’t eat it. Eventually, he did!

Looking forward

It’s been a couple of months now, we no longer blend or mash his food for him. He now eats a few pieces of meat with his dinner, he now eats potatoes in pieces when the rest of us do.

We don’t have to boil his pasta to the point that it turns to mush.

He still doesn’t eat a very large variety of foods, it’s still mostly pasta, potatoes and rice… and he’s still on a rather strict gluten free diet, but now we can add in a few things here and there that he’s at least willing to try.

He’s almost 6… and it’s going to be a very adventurous year, because along with a whole new year of new discoveries and experiences, he’ll have a whole new diet. It’s very exciting!

The Atkins Diet for Autism? SCD And Me

Written on August 30, 2010 by Stuart Duncan

Filed Under: Autism

If you’ve had any involvement with the DAN program, you’ve probably heard about this diet but if you haven’t, there’s a good chance that you have not. It’s not as widely known as the GF/CF diet and is not as widely tried.

The reason for that is that it’s a very difficult diet to stick to, especially for a growing child and it’s also a very expensive diet.  It’s basically like the GF/CF diet on steroids… only without the steroids.

The SCD diet (or Specific Carbohydrate Diet) basically means taking out all starches and complex sugars from your diet (on top of Gluten and Casein!!!). I’m not going to get into specifics, you can read about it here if you wish… but I will tell you this, my wife and I are really struggling with this.

We have several reasons for having issues with this diet and I thought I’d share some with you:

1. Financial: We simply can not afford to be getting goat’s milk and other stuff that this diet restricts you too. It’s not in huge demand, it is extra healthy for you, it’s processed differently… in the end, it costs more. A one litre (yes, I’m Canadian) of goat’s milk costs the same as a 2 litre of soy milk.

2. Nutrition: Yes these restrictive diets are better for you, but better for you does not always mean ‘healthier’ for you. When you are dealing with an Autistic child that already will not eat meat, only eats 2 kinds of vegetables, no fruits… well, you get the idea. How do you take him off the rice pasta, rice and potatoes that he will eat?? What’s left?? Yes, I know some of diet experts will have alternatives but I can tell you right now that those alternatives leave him lacking in some vitamins, minerals and proteins that he should be getting in his regular diet. He’s skinny enough already.

3. Routine: Because we didn’t know about this diet before hand, we went with what we did know which was moving him to Soy milk, rice pasta and some other foods and drinks that he’s come to not only love, but depend on as part of his regular routine. Oh, and what child doesn’t love candy?  So when you have a child that only eats starches and candy and Soy milk… to move him to the SCD diet means a complete and total change to his diet and his routine. If you’ve tried such a thing with a child that has Autism, I can feel you cringing as you read.

4. Initials: I refuse to eat from a diet that has the same initials as me. Yes, my middle name starts with a C.

So what is the final verdict? Well, we’d like to try it, for the sake of trying it.. but we simply can’t. Not right now. Maybe not ever.

However, if you have tried it and hated it, liked it, still do it or quit… I’d love to hear from you. And if you haven’t tried it, well, I’d love to hear from you too. What are your thoughts?

Their Routine Becomes Your Routine, Their Diet Becomes Your Diet, Their Life Becomes Your Life. Welcome To Life With A Child With Autism

Written on July 26, 2010 by Stuart Duncan

Filed Under: Autism

It’s a bit of a long title but it gets the point across. When you have a child with Autism, you quickly find that certain diets will or won’t work, you quickly learn that having a stable routine is essential to not just getting things accomplished but for the sanity of your child and yourself. These things work best when you not only impose them on your newly diagnosed child but also when you work them into your own life and that of your whole family.

When you have a child with Autism, or any real disorder/disease/disability, you quickly find that your life changes so much more than what your family and friends teased you about when they bugged you about getting little sleep or dirty diapers. Your life quickly becomes a juggling act of research, cooking, time management, doctor, advocate, psychiatrist and so much more. You look back and think to yourself how all those family and friends really had no idea how good they had it!

If you’re a single parent having to deal with Autism, I truly feel for you because from where I sit, I don’t even know how it would be possible to manage it… so kudos to you for doing it!

My wife and I tag team it, that is to say that she does 90% and I do 10%… maybe I’m a bit unfair in being modest but it’s not far off, but even if 10% is all I could contribute, I know it’s an important 10%.

This is a short glimpse of how it is in my house, perhaps some of you can relate, perhaps some of you are looking forward to something similar, perhaps some of you are just interested.

If the day were to start at midnight, then I’d be the one on call, getting up with Cameron when he can’t sleep, or has nightmares or gets thirsty. Why does he get thirsty over night? Well, because he doesn’t eat… we’ll get to that later in the day though.

Then I get up at 5am on school days or 6am in the summer (because we let him stay up later in the summer) and handle the mornings with him. This means either scrambled eggs or bananas with peanut butter for breakfast, more soy milk to drink and we sit on the couch watching a movie while we struggle to wake up. We play and watch stuff and do stuff until 9am when my wife Natalie gets up and takes over.

See, Natalie has Fibromyalgia which means that she needs 2 things to function, sleep and exercise. So I handle the nights and mornings… and the fact that I work from home means that she can sleep until I start work since I have no commute or anything. However, this means I generally get no breaks between waking up early, doing stuff all morning and starting work.

So I work while Natalie deals with both boys all day, all the while cleaning, cooking, educating them when she can, taking them to the park or even shopping and more importantly, to Cameron’s therapy appointments.

You see, she doesn’t even drop off the boys anywhere, especially Cameron. She stays with him to ensure that the ‘experts’ don’t do anything that might cause our son to regress (because even they don’t know the cans and can’ts for all Autistic children until they get to know them) and she also soaks in all they teach, learning it all and bringing home reading material when ever she can.

Meals generally consist of what ever Cameron can eat which means rice, eggs, brown rice pasta, bananas, corn and peas… beyond that, there’s not too much. So we’ll usually be eating something that fits that. This means that we may have some meat and things extra that he doesn’t have but generally his diet dictates our diet.

Come supper time, I’m done work and we all sit down for a family dinner which is to say, 3 of us sit there while Cameron runs around the house playing and coming back for bites from time to time. If he’s overwhelmed or had a rough day, chances are he won’t even eat at all, much less come back for bites. If it’s not something he wants, he simply won’t eat. Again, our meal generally fits his diet. When all is done, either we play together for a bit or we all go to the beach where Natalie goes for a run around the lake and I take the boys swimming. Again, exercise is important for her and swimming is very beneficial for Cameron… and just plain fun for both boys.

From there we return home and I give the boys a bath… another downside to my wife’s Fibromyalgia is that she can’t be hunched over the tub or wrestling with wet boys all that well.

We enjoy another movie or tv program, some quiet time and then I put the boys to bed where I read them a story, get them a drink and tuck them in.

Then I go back to either watch a movie with Natalie for some much needed quiet time or, as most often happens, I sit down to do even more work. You see, the therapies and gluten free foods and trips to the city for things like test and such, they leave us living paycheck to paycheck, or worse in many cases… which means that I need to work that much more.

Also, my wife has even started working a little as well, doing some evenings and part time work here at home as well.

We’re both extremely lucky that we can work from home, because commute times would kill us, doing things separately/individually would kill us…. we wouldn’t be able to cope quite as well anyway.

Then around 11 or midnight, I’m back to bed to start it all over again. No days off, no day cares, no babysitters, no rests or breaks. It’s the routine, it’s the diet, it’s the life.

I kind of skimmed over my wife, Natalie’s, part but truly it is the 90% to my 10%…. she takes him to all of his appointments, she deals with all of his meltdowns through out the day, all his fighting with his little brother, does all the meal preparations which often includes 3 different types of meals from mushy processed slop for Cameron (to mix up and hide things such as meats in his meals) to solid pieces for my toddler who likes to use his fingers and then a ‘normal’ meal for she and I. She learns all of the methods and processes for treatments and also learns of the products and toys and devices which aid in helping him write, deal with his senses and so forth… she handles them out and about doing groceries and walks and such…

Every little thing you could do that sounds like a chore when you have a child becomes a very real challenging task when you add in Autism.

You can’t deny the complexity and you can’t deny the struggles that all of us feel every single day. But if you don’t adapt and learn when to make your child’s life a part of yours and to sacrifice and make your life a part of your child’s, then it can be down right impossible.

It’s even more difficult to explain it to friends and family around you who think you’re strange or even down right mean that you don’t take your child to a county fair, or late movie when they want you to just up and join them… if it doesn’t fit the routine, if it doesn’t fit their sensory and social needs, if there is no food for them to eat….  you simply can’t do it. And while they may never understand, you stay home and you keep your kids home… even when they are judging you for it.

Because as much as having a child can be a life changing experience…  their life is now your life.

What Is The Gluten Free, Casein Free Diet? Does It Work?

Written on May 22, 2010 by Stuart Duncan

Filed Under: General

This probably ranks #2 on the hot topic debates in the Autism community where parents are fighting with the ‘experts’.  Basically that means that there is a whole lot more to this than a simple yes or no answer, there is no black and white here and therefore it causes a lot of tensions.

I’d like to cover this topic in a few areas: what is the diet, what is the theory behind it and will it work.

What is the GF/CF diet?

Breaking it down to it’s simplest form, the gluten is wheat and the casein is dairy.  This isn’t limited to bread and milk however, it covers just about everything you can find in your local grocery store aside from meats and veggies/fruit.  So cereal, pasta, cheese, cake, snacks, waffer cones you hold ice cream in… everything.

Moving to a GF/CF diet can be a rather huge step for the average person as it means no more sandwiches, switching to brown rice pasta and giving up just about everything you eat. No more hamburgers, cakes on your birthday, cookies, grilled cheese, kraft dinner… we’re talking about eliminating just about everything on some people’s regular diet.

In our house, we’ve put our son on soy milk, brown rice pasta, eggs, bananas and peanut butter and a few other things. You learn to find them when you have to. Also, you don’t have to be all that limited if you’re resourceful. There are some great sites around the internet with some absolutely amazing GF/CF recipes and grocery stores are growing their GF/CF sections a lot over the last few years.

The truth of the matter is, gluten is quite bad for you. There’s no healthy reason at all to eat it, it’s simply added to our foods to give it it’s texture, consistency, help preserve it… stuff like that. If everyone ate less gluten, we’d all be healthier so there’s no reason not to give the diet a try. Gluten proteins and Casein proteins are not essential to a healthy diet and therefore there’s not only no risk in being on the diet, it’s actually good for you.

What is the theory behind it?

I don’t think they’ve proven it scientifically, but they have narrowed it down pretty good… the theory is that some Autistic children have a digestive problem where their systems are unable to break down the gluten and casein proteins in their stomachs. This causes them to work through their systems, entering the blood stream and eventually finding their way to the brain where they act like a pretty powerful drug, causing the children to become very hyper, to see things (colours and trails behind moving objects), become irrational, unable to speak, clumsy and so forth. Imagine a grown man tripping out on heroin and you can begin to see similarities in your child after eating some bread.

Will it work?

Well, this is the tricky part and where the heated debates come into play. Even the ‘experts’ can’t agree because they can’t get the same results twice. In this article, you can see that they have concluded that the diet does help and further down the article lists another study where others concluded that it doesn’t: foodconsumer.org

Autism is a pretty tricky condition with seemingly thousands of causes, thousands of differences and thousands of different ways to ease it.  This means that yes, the diet might work… might. However, some Autistic children simply are hyper, clumsy, unable to communicate… that’s how they function and unfortunately, the diet will not change that.

But a lot of times, the diet actually will help and therefore, I really recommend that you at least try it… a week, 2. Try.

In Cameron‘s case, we put him on the diet and saw a difference almost immediately… less repetitive motions, more eye contact, more calm. It was a miracle in our eyes and we never looked back. Our house is almost completely gluten free at this point.

And this is how I know that not all answers are guarantees for everyone. I said we’re almost gluten free, not casein free. People lump the two together but in reality, just as it may or may not work, in our case, it half worked.

Once we removed gluten from Cameron‘s diet, he was instantly a different child. The casein however, made very little difference. If he has too much, it does affect him a little. But for the most part, we can still give him orange cheese, yogurt and ice cream. We keep him on soy milk though.

Conclusion

Don’t listen to experts, don’t listen to parents. The only person you can listen to is your own instincts and your child’s results. There’s no harm in trying the diet, there’s no harm in not trying it. If you do try it, you may see results, you might not.

There’s only one thing I can say to all parents of all Autistic children…. try everything!! If it worked for 1 child out of one million, try it. It might work for you. Try the diet, you don’t have to commit to years of eating food you don’t like. Just try it.