Autism Thoughts

From here:

http://hatingautism.blogspot.com/2007/11/how-do-you-stop-autistic-self-biting.html
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« I'm nearing the end of my rope with Autism. My family has put up with my son biting himself and screaming almost every day for over three years now. I asked in countless places if anyone can tell me why these kids bite themselves and how to stop it. Nobody seems to have an answer.

I've endured countless well-meaning people who have told me to give him some rubber thing to chew on. These people have no idea how intense this problem is. This biting is not some behavioral problem. My son appears to be in great pain of some sort. The problem is that he still can't talk and has never given any indication what might be bothering him to cause this biting.

The biting disrupts our entire lives since none of the aides who come in to help with Sam can be left alone with him. He can overpower any woman and can easily hurt them in one of his rages. It makes going to work impossible sometimes. It makes helping our other kids with things impossible at times. IT has destroyed countless dinners and has ruined almost every day of our lives.

I've had about all I can take. No God damn doctor has been able to offer any opinion about why this occurs and none has been the slightest help in finding a way to stop this. No combination of drugs has been any help. Keeping him off all drugs has been useless. Chelation has had no effect one way or the other. During some long breaks in chelating, the biting never changed. The screaming never got better or worse.

I'm done talking about anything to do with autism until I can solve this biting. If I can't find a way to stop it very soon, my son will be going away to an institution.

I'm begging for someone to tell me how to stop the biting and screaming. I just can't take it any more. »

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Sooooooooo many thoughts on this one. I don't even know where to begin?

First we must consider the source. This is from the controversial Hating Autism blog, from the guy who has been saying his son has been making great progress through chelation. There is talk on the net that he is lying somewhere. Either in the progress or in the biting.

Let's set that aside for now.

I would next want to say how bloody proud I am of the people who have responded and left comments for him. Many of the people he has trashed in his blog have come to his rescue in this. There is a possibility (small though it may be) that the post itself could begin a badly needed healing process within the entire autism community.

Let me digress a bit here to a similar topic.

I have recently been having my own similar problems with biting. The "teething instinct" has been kind of getting away from me lately and sometimes it just drives me nuts. More than one person has been bitten when they have hugged me this past week, though it was nothing I wanted or intended to do, it just happened. The bites and the teething are usually gentle, but one person (my friend Danielle) told me I left marks on her shoulder. :(

In the past, parents have come to me and asked about this. They say their child is nibbling on everything. This can be dangerous. Consider power cords if nothing else. Parents want to know how to stop it.

I tell them they are looking at this the wrong way. This is not something they want to stop, they just want to redirect it a bit.

What is happening is the wiring of those particular individuals creates a sensory dysfunction that finds comfort in the teething. Why do people chew gum? Why do people nibble on pencils? The neurological effects of oral stimulation are well documented.

Oral stimulation calms the oral, tactile, auditory and proprioceptive senses all at the same time. That's in a person with normal sensory processing. Now imagine you can take that effect and magnify it a few times. That's what is happening in some cases with autism.

There is also the endorphin release, which I suspect is also probably increased by the autism. At least in the kids (and adults) that are always chewing on things. Everyone with autism gets something different in the package. Some will be effected by this, others won't. You roll the dice with autism and take the hand you are dealt.

I have a few teethers and teething rings (including one which is my favorite) and I can get completely lost in them. The teething draws you in, so there is nothing else except for yourself and the teether.

All that was, all that is, all that will ever be is just you and the teether.

It is like a drug, only it is within your own self.

With the constant sensory bombardment these kids receive, they are looking for a way to calm down. Some of them have it in the chewing and gnawing and teething. My personal opinion is this should be allowed in certain circumstances and places. It is calming and it is healing. What you must do is find an acceptable thing for the child to be gnawing on.

But this may not be easy. There is a standard "tubing" that is used by occupational therapists for this type of sensory dysfunction. I have tried it and it doesn't work for me. I had to go through a lot of teethers before I found something that did.

I still have most of them in the closet, sitting in a box.

Add to this the fact that I am 41 years old. Most of the teething rings out there are designed for someone much younger. So how to find an age appropriate teether? They are out there, they are just hard to find. Maybe one reason I had problems finding what would work for me was because I limited my search to things that looked a bit less juvenile.

The chewing, the biting, and the teething are all typical sensory processing anomolies in autism. But I don't think that's what is going on in the quote above.

It is hard to say exactly what is happening. I have seen this in my travels many times and yes it is as heartbreaking as he claims. You want to stop it, you want to stop the pain, but you can't because you don't know where the pain is and you don't know where to look.

(I know that my own biting is coming from a sensory processing disorder. And I also know that I am currently and involuntarily biting my friends and other people and objects because the recent changes in weather have brought my fibro out of remission and the pain and the multiple seizures from the autism (brought on by the fibro) are hurting me deeply. And I am hopeful that once the weather decides what it wants to do (instead of bouncing around like it has been) that things will again be as they were before the autumn came. The need is primitive and instinctive and right now it is stronger than I am. I will rejoice the day that changes back again. I won't deny that I love the teething. It is a very good feeling. Sometimes it is even better than a good feeling. But I do not like biting my friends! I want my control back!)

The difference between myself and the child above is that I am not biting my own self. To my knowledge I have never done this. (I hear my mother in Columbus has been reading this blog, she can leave a comment if this is not true. Then again, do I really want to know?)

What is happening with the child above goes way beyond just sensory processing. This is more of a self injurious behavior. There are a few different causes and theories about this.

One theory is similar to my own biting problems in that the self injury is a release of endorphins, creating a pleasurable feeling. I don't really buy into this theory because certainly the child must realize (at some point, maybe not right away) that biting yourself is not necessary for the endorphin release. You can bite other, far less painful things and get the same, if not a better effect.

There is a theory that the biting can be caused by seizure activity. For this to be the case, though, the child must usually be in puberty. (That's where seizures start in autism, and where they started for me.) My understanding is this particular child has not reached puberty yet. Still, you can't rule out the seizures altogether.

Another typical reason for self injurious behavior is pain. Usually from an inner ear infection or a migraine headache. But this kind of behavior usually involves head banging.

However, gastrointestinal problems could lead to a biting behavior. The biting would release beta-endorphins which would block the gastrointentinal pain.

Or the child could be gating the pain in another area of his body. By creating pain in one area of the body, you can reduce the pain in another area. (True enough, though I don't recommend you try this at home.)

Or, of course, it could simply be the result of frustration from an inability to communicate, since we know the child is non verbal.

The list goes on and on. I do kind of wish the original poster had more information in his blog. What, exactly, is the child biting? When does it seem to happen the most? Does it begin gradually and get worse as he goes on, or is it just a sudden out of the blue attack at random times? Has this problem gotten worse as the weather changed (as it has with me) or is it constant through the year?

In the past, I have been blessed that I have figured out what is going on. Granted, it is rare that I can, and I usually have to be there to witness it personally, but sometimes I do get it right.

I do have some advice for him, though I am hesitant to give it to him because, if you check his comments, you will see he has been overloaded with advice already. Mine is different from theirs, but with something like this, who knows which of us is right?

He will read this, and if he wants my advice he can comment me and I will give it to him. Elsewise I don't want to add to his advice overload.

Meanwhile all I can do is say my thoughts and prayers are with him. Despite the current problems between the biomedical and anti-cure factions of autism, no one on either side wants to see this kind of thing happen.

If he ever finds the cause, I would be most interested in hearing what it is. It may help me (and others) in future advocacy.

If any of you have any ideas what may be causing this child to bite and to scream, please leave a comment and let me know. Now, if you'll excuse me, I also have my own biting problems to work on...