So....the autism thing

Since April is nearly over and it's autism awareness month, I suppose I should talk a bit about it. I guess the best way to start is to rehash the story of How I Got Here.

My oldest was born in 1999. Healthy, happy and so on. One peculiar thing he did as an infant was to avoid eye contact. Our doctor assured us it was because he was so young and his eyesight was undeveloped and he was probably focusing on something in the background that was more interesting. Besides, babies don't recognize faces for a few months after birth. Only later did we find out that our doctor was an idiot.

He was 16 mos. old when his little brother was born and he was walking and making wishes known by pulling me or my wife by the hand to whatever he wanted etc. He was fascinated with the wheels on toys. If you gave him a truck he'd turn it over and spin the wheels and smile. Only later would I find out this is a major warning sign. This was our first born and what the hell did I know? He didn't come with a manual or anything we were just doing what seemed right with an occasional referral to The Book.

As he got a bit older we noticed that he did not point at things. Rather, he would push my hand toward the thing he wanted. He also didn't respond to his name very often. I would have to get into his line of sight to get his attention. I figured he was just focused on what he was doing. By this point my wife was beside herself and adamant that something was wrong. I wasn't sure but figured it was better to find out one way or the other. We did our homework and went to the top developmental pediatrician in Delaware. Highly recommended and blah blah blah. We trekked up to Wilmington and waited forever in a hot observation room for her. We were all very antsy by the time she arrived. After a cursory observation and interview she said he was fine and we had nothing to worry about. My wife asked about PDD-NOS (Pervasive Developmental Delay- Not Otherwise Specified from DSM-IV) "Don't read any of it. It will only confuse you and make things worse." I was very very relieved. My wife was not satisfied.

We carried on for another six months. No talking yet and he's now two and a half. Now I'm firmly in my wife's camp but very confused. Why would this doctor tell us he's fine if he's not talking. We had his hearing checked and his mandibles (that'd be the jaw bones and muscles etc.) No problems there. Finally we went to Childwatch for an evaluation. There were about 8 staff members each with a different specialty. Speech Therapist, Developmental Pediatrician, Occupational Therapist, etc. In a strange twist, it was Halloween and some of the staff were actually in costume which made this all the more surreal. They evaluated him and after zero discussion they unanimously agreed that not only was he autistic but profoundly so. My wife cried and I felt vindicated? Determined? I'm still not sure what the right word is. I had been through denial for the previous 6 months and was now very mission oriented. Finally we had a name for the problem and a course of action to be taken. In my mind I was thinking "Well, we have work to do, let's get to it." It was quiet why my wife composed herself and I spoke first.

"Fine. We have a name for this. What do we do now?"

They explained that I was very lucky to be in the only state in the nation with a public school exclusively for autistic kids.

Fast forward several years and here we are.

One thing I think people generally hear about is what autism is like broadly.

It affects social interaction and cognitive development and so on. That is true but also overly simplistic. Autism is a spectrum disorder which means that there are people on either end of it. People who are Asperger's may not even be considered by some to be autistic. You may know someone who has Asperger's and not know. They may not even know it. They may just be labeled rude, inconsiderate or just odd. Autistic people range from Temple Grandin on one end to my son on the other. (As an aside I highly recommend her books they are fascinating)

So, what's it like to have an autistic son? In a word, challenging. From here on out I'll describe our situation specifically and am not trying to extrapolate that to include autism generally or whatever.

My son, in addition to being autistic he has pica, OCD, ADHD and a sleep disorder. These are common comorbidities for autistic people. Pica seems to have abated for the most part and we haven't had any incidents in a while. OCD and ADHD are major concerns. For example, he is very routine driven. Any variations from routine are met with very severe temper tantrums and frequently aggression (i.e. hitting and kicking) towards people and objects. Sometimes we have no idea what triggers the tantrums and sometimes we do. We have to do certain things in certain order to keep him on track. Shoes must always be put on left first then right. Velcro straps on shoes must be fastened bottom left first, top left, bottom right then top right. All doors in the house must be completely open or completely closed. A half open door will be closed by the self-appointed Door Closer.

Sensory issues are a big concern too. Eldest is very particular about certain things. He will not eat soft food. The mere sight of pudding will induce gagging and probably vomiting. Even if his brothers are eating it and he sees it, he will throw up. Most of the food he likes is crispy or crunchy. We've been able to get his diet fairly balanced all things considered. He also has a "high sensory diet" meaning he needs a huge amount of physical stimulation to feel grounded. He'll ask for "scratches" with a sign and want us to scratch his back, arms, legs etc. Or he makes a sound for tickle which sounds more like "Di Da" and then he'll giggle and hunch his shoulders to block you. It's probably my favorite thing he does. He also is in constant motion. If he's sitting still he's probably about to fall asleep. We bought him a joggers trampoline and he bounces on it constantly. It's great exercise and helps keep him in shape as the medicine he's on causes a dramatic increase in appetite.

Since he cannot talk communication is very very difficult. His receptive language is very good. Usually much better than people give him credit for. I can give complex instructions like "go get your shoes and socks and sit on the steps" and he can do so. (Will he do so is another matter) He uses sign language for highly preferred activities and wants. He can sign juice, help, walk, scratch (like scratch my back please), tickle etc. When he cannot sign what he wants or we cannot meet that need he will usually become aggressive and hit me, my wife or whomever else is near. This is a major problem because his brothers are on the receiving end of this sometimes and we can't always stop him. Sometimes, eldest will be in one room by himself watching Elmo and he'll run from the room, find his brother, hit him in the head a few times and run back. No provocation or reason (that I can see). Everything was quiet a minute ago and now my younger son is crying. That's a big reason we don't take eldest out in the community much. The tantrums and stares are bad enough but I can deal with those. It's the fear that he's going to hit someone or someone's child that I don't want to risk.

Sleeping is another issue I've talked about from time to time here. Autistic people frequently have trouble sleeping. My son will often sleep from 7:30 until 12:00 or so and then be up for the day. The thing is, when he's up he's up. Remember that he's ADHD so he will be running and jumping and vocalizing at top volume at 1, 2, 3 in the morning. This one is a real strain. I would go so far as to call it debilitating at times. At one point in 2003 I was working on a major project at work, had a newborn and eldest was in the middle of a two week period of not sleeping. I can honestly say that nearly broke me and in all seriousness nearly ended my marriage. We made it through but barely. We've more than recovered since then and deal with it much better now. We have a system and a routine and we basically make the most of it. It is very very difficult not to be selfish when you're that sleep deprived. Lastly, my son is on sleeping medication. As such, he cannot control his bowels when sleeping so he has to wear an overnight diaper. Frequently, he'll take it off when sleeping and then pee everywhere. Just last night I went to check on him and he was drenched. He had a perfectly dry diaper around his knees. I sat him up, took his clothes off and moved him into our bed. Cleaned him up while my wife changed the bed. I put his pajamas on him and back to bed. He really didn't wake up but it could have easily gone the other way and he would have been up for the day. Last week he peed in the bed 5 days in a row. Think about that. 5 blankets, and 5 sheet sets to wash in addition to the regular laundry for 6 people. Now you know why we're doing a zillion loads of laundry per week and why my power/water bills are so high.

Things you need to know about autistic people and parents of autistic people.

1. No, my son is not Rain Man. He cannot count cards, play piano or whatever. I appreciate you trying to put some sort of positive spin on this but you sound like an ass.

2. My 7 year old son may have a meltdown in the grocery store for reasons unknown (even to me). Staring at me like I'm a hapless parent is bad but I'll ignore you. Open your mouth and I'm giving you both barrels for your ignorance and lack of compassion.

3. Don't patronize him. He's not stupid and he understands what you're saying. Talk to him, he may surprise you, he may not. Give him the benefit of the doubt.

4. Caveat to above. Set expectations accordingly and know his limits. Don't set him up for failure. I do not bring him into areas with large crowds. He'd have a full blown meltdown that would probably have any nearby priests attempting an exorcism.

5. Don't pity me. Having a disabled child is not ennobling or heroic. It just is. I didn't choose this, it was chosen for me.

6. Caveat to above. It has made me a better person. I am far more patient and compassionate than I have ever been and perhaps why this was chosen for me.

7. This is normal for us. I've never not had an autistic son so I have no idea what it means to have the family go to a restaurant for dinner. That's something we'll never be able to do.

8. Autistic children are very expensive. They break things all the time. They usually pick very expensive things to break. My son likes to kick holes in drywall. Some kids like the sound of breaking glass. They have particular diets and and those diapers aren't cheap. In 2007 I had nearly $9,000 in out of pocket medical expenses. The bulk of that was for eldest.

9. If you complain about how busy and hectic your life is with your two typical kids I am either going to be bemused or enraged depending on how good or bad my week has been.

10. Don't shy from asking questions. I'd rather have you ask me directly about how, why or whatever than beating around the bush or keeping mum for fear of offending me.

11. One autistic child is as difficult to handle as my three other kids combined.

More if I can think of them.

Comments

Well done, Duffy. I've learned something here.
liberalgeek said…
Nice post. As you know, I have an extensive background in autism. I have a few thoughts on the subject.

I commend you on keeping the marriage together. It ain't easy and I have seen many a family torn asunder. It is work and often not fun.

I agree that it is not ennobling. In the abstract, it may seem as such, but you do what you have to do.

One suggestion that I will make is to keep trying to community involvement. I know it is difficult, but it is good for your son, it is good for you and it is good for the rest of us. I have been in a McDonalds with 5 children with autism and had good times and bad. The fast food places closest to the school are best (DQ, McD's) as these places have a good deal of experience dealing with the population.

Keep up the good work, Duffy. It is thankless, but your child and you are better off for it.

Finally, let me humbly offer respite services to you on occasion. I would be happy to spot you and the wife for 2 or 3 hours for some reconnect time.
mkfreeberg said…
No, my son is not Rain Man. He cannot count cards, play piano or whatever. I appreciate you trying to put some sort of positive spin on this but you sound like an ass.

Boy, I can relate to this. My situation is a little different because my kid is what you'd call "borderline."

I found out the hard way that a lot of these disorders are symptoms and nothing more. That is to say, one day a researcher noticed one kid behaving a certain way had some traits in common with another kid...and started making a list of such abnormal behaviors. And a disorder was born. No known physiological cause for it yet, maybe there will be someday -- but for this generation, all they're doing is noticing common behavioral attributes and calling 'em out.

That isn't true of "classic" Autism. But it is true of "Asperger's."

I don't mean to trivialize that as a scientific activity, I do think they're doing it the right way -- you notice what's wrong, then after you have a good definition try to find the cause. But at the same time, it seems to be to be an important distinction to make because when you say "I'm diagnosing XYZ with ABC" the ramifications of what you are saying are completely different. If there's neurological damage, you have to show that it's there. If it's simply a behavioral disorder with no known cause, you're just jotting down an opinion that the kid might have it and you can back out at any time.

My own kid has both Asperger's and severe Autism...to people who've just met him. To people who've been around him 24 hours or more, he "tests" negative for both. He's more-or-less normal, with some quirky weaknesses and strengths (probably because he's anti-social like his Dad). He doesn't have developmental disabilities. It's obvious. But since he's seen a doctor who was a dimwit the other way (from the doc you were seeing), now we have a "diagnosis." Gee, thanks.

I can't stress enough the importance in differentiating between disorders that have known physiological causes, and disorders that are simply opinionated observations. And to put together a "spectrum" that straddles that line, including selections of both, is grossly irresponsible. By which I mean, someone should have lost the letters after their name for that. It's the worst thing any behavioral specialist has done since Dr. Spock told us not to spank.
mkfreeberg said…
Oh, and one other thing, before I forget...

Don't pity me. Having a disabled child is not ennobling or heroic. It just is. I didn't choose this, it was chosen for me.

This makes you one of my heroes. I mean that, man. Cheers.
Duffy said…
Thanks everybody. I really do appreciate it.

LG: Thanks for the offer, I may just take you up on it

MKF: Indeed. My experience w/ the diagnostician was so awful my wife wanted to file charges with the AMA against the doctor for negligence. I said she could but it would likely lead to nothing.
Hube said…
Duff: terrific post, man. God bless 'ya.
Kelly Burgess said…
Hi - my name is Kelly Burgess and I'm a writer for iParenting Media. I'm working on an article about infants whose parents intuitively know they are autistic, but are told it's "nothing to worry about." I'd like to interview you, please contact me at kburgess@zoominternet.net for references and more information.

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