Saturday, November 17, 2007

How Do You Stop Autistic Self-Biting? Help!!!

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.

89 comments:

Anonymous said...

Hi John,
My son is 5. The freakish strength almost went away with lupron. It took 6 months to get the dose right for us, but essentially in 1 year he has not gotten more stronger. It also seemed to take away the extra aggression and the seizure types he had. In 18 months on lupron he has done nothing but make great progress.
I cant help but think the 'hard to chelate' types have somehting to do with testosterone as do freakish strength and thick bones etc etc. We have barely done 5-6 months of chelation. More chelation is definetly comming but for now lupron is working well.
Cool.
Srinath.

bullet said...

I know we don't agree on most things, but my heart truly goes out to you with this and I wanted to try and help. Watching a child self injure when you know they can't help it and you don't know what to do about it must be extremely hard.
Ok, you say it's down to pain. Daft question here, but has he had his jaw and ears checked out? If he has loose joints or severe earache, then maybe he feels he needs the pressure of biting to relieve some of the pain.
If he's in pain then maybe the noises he hears just seem to be exagerrated and become painful, which would mean that situations like family meal times with all the clanking cutlery and talking would cause a bad reaction for him.
Is there anyway you could get him to wear either ear defenders or a helmet until you sort out the root cause of the problem? If his teeth are causing him pain (they're not particularly crowded or crooked are they?) then maybe a brace would help (though speaking as someone who used to fiddle about and break hers I understand this one might be more tricky).
I'll have a think as well and see if anybody else I know can come up with some better suggestions.

Anonymous said...

Have you tried diet changes, antivirals, and other gut treatments? Just wondering as our kids got better with those after chelation made yeast a problem. He oculd be having severe gut pain.

Kathleen Seidel said...

Crotched Mountain Rehabilitation Center may be able to help. They specialize in serving people with developmental disabilities and acquired brain injury, they have an outpatient clinic, and they accept insurance.

christschool said...

I agree with bullet's suggestions. My heart also goes out to you and Sam. I've self injured before as well and it was typically caused by severe migraines. Migraines so bad that you vomit for 3 days until the bile starts to come out. I don't know if a doctor has tried migraine medication with Sam, but that would be the first thing I would look into. Without the means to communicate, Sam could be acting out of frustration with these and trying to move the pain somewhere else that he can tolerate.

If someone has never had a disabling and truly mind altering migraine, they may not have suggested to try migraine medication.

If you do decide to try this, you need to keep a log and look for signs of the migraine "behavior" BEFORE it comes on. By tracking these patterns, you will know when to administer the medication because if you catch it too late, the medication isn't very effective.

If I lived with these migraines constantly and I couldn't communicate what was happening to me, I would quickly slip into behavior like what your describing with Sam.

lisa782 said...

My son did some biting and some headbanging and alot of thrashing around on the floor before we put him on "the diet."

If you haven't done it yet, it may be worth a trial.

Tom said...

It sounds like your family is at the end of its rope. I live in a major metro area and we are fortunate to have two crisis psychiatric centers that serve autistic children. They admit children for however long is necessary to address issues. I owuld think there's a similar facility where you live. It will give him the help he needs and allow your family to back off the ledge.

Donna said...

I don't know. Im so sorry.

Is your son registered with DDD so you can get more help in the home?

My thoughts are with you and I will pass the word to others...

Donna

Anonymous said...

not just the gfcf diet but the full SCD diet may be helpful. Something that goes all the way to a small number of foods so you can build up and see if certain things trigger the biting.

I know you focus on mercury but I know when our kids were treated for mercury they got some bad gut problems and their behavior actualy got worse. They got alot better when switching the diet and the mercury was now low, so it made it easier to see gains.

Anonymous said...

You need to run an Amino Acids Test (blood) with the ammonia level through your doctor and a CDSA. See if they will also run a neurotrnasmiteers test and check uric acid levels plus mineral levels. I suspect that there are multiple issues in play. The high pain threshold can be the result of imbalanced neurotransmitters, high ammonia and clostridia imbalances. The biting is usualy due to frustration and the inability to convey messages. Usually if you can calm them down by adding GABA, valerian, and melissa. It takes about a week to have the full effect. Please do the testing.

LIVSPARENTS said...

"If you do decide to try this, you need to keep a log and look for signs of the migraine "behavior" BEFORE it comes on. By tracking these patterns, you will know when to administer the medication because if you catch it too late, the medication isn't very effective."

I like the log idea, it's tough, but only you know what he ate, what was happenning, lighting, TV, where he was what was happenning, ANYTHING. Keep a log of everything you can and you MIGHT just see a pattern.
Good luck, don't give up...

Fore Sam said...

Thank you for the thoughts, everyone.

I'm hoping thre is someone out there who has dealt with this and solved it.

I'll just leave this open for awhile. Maybe more ideas will present a solution. Maybe others will also benefit who are going through the same thing.

I'm sure I'll have questions after I see whatever else comes in for advice. Thanks again all.

Anonymous said...

My son bit his hands, knawed on shirts, bit me, mouthed toys / things relentlessly and he had extraesophageal reflux and an disorder that attacks the esophagus (not GERD, but very painful). I know what you mean about the chewy tubes: if it ain't sensory related the tubes aren't going to help a bit!

I postponed doing a scope (upper GI and laryngobronchoscopy) for as long as possible because the thought of taking that kiddo to the hospital, getting an IV, waking up, etc... scared the crap out of me. But, we learned so much from having a doc scope his throat, bronchial tubes, esophagus, etc... Without all that we would never have found the esophageal problem and we wouldn't have found the damage in his throat or the aspiration problem.

At the time he was diagnosed, my son was using a communication device, signs, and some speech, but even then all he could get out by using the device was "My mouth hurts". This same kiddo was doing a lot of self-injury directed at his chest and stomach and before finding a really awesome GI doc in Chicago, the dev. peds wanted to put him on rispderal.

I know that scoping is not an option for everyone and should not be undertaken lightly, but it did reveal some problems that were not run of the mill, and ones that you can't tell through blood tests or just through a regular exam. It might be something to think about.

Anonymous said...

J Autism Child Schizophr. 1978 Sep;8(3):325-37.Links
Disruptive behavior: a dietary approach.O'Banion D, Armstrong B, Cummings RA, Stange J.
The effect of particular foods on levels of hyperactivity, uncontrolled laughter, and disruptive behaviors was studied in an 8-year-old autistic boy. The floor of the child's room was taped off into six equal-sized rectangles to measure general activity level. Frequency data were recorded on screaming, biting, scratching, and object throwing. A time-sample technique was used to record data on laughing. Data were gathered during four phases. During an initial 4-day period the child was fed a normal American diet. A 6-day fasting period followed, during which time only spring water was allowed. The third phase lasted 18 days and involved the presentation of individual foods. During the final phase of the study the child was given only foods that had not provoked a reaction in the third phase. Results showed that foods such as wheat, corn, tomatoes, sugar, mushrooms, and dairy products were instrumental in producing behavioral disorders with this child.

PMID: 690067 [PubMed - indexed for MEDLINE]

Is it food provoked?

Kassiane said...

Has he had an EEG? Some frontal lobe spikes sometimes (rare. But autistic people are rare) can lead to self injury.

My money would be on pain, though. Either cluster headaches, migraines, or something in the gallbladder/kidney areas.

Can Sam identify on a picture where hurts? I'm sorry he's suffering so much.

Anonymous said...

Br J Psychiatry. 1996 Jan;168(1):105-9.Links
Plasma beta-endorphin concentrations in people with learning disability and self-injurious and/or autistic behaviour.Willemsen-Swinkels SH, Buitelaar JK, Weijnen FG, Thijssen JH, Van Engeland H.
Rudolf Magnus Institute for Neurosciences, Department of Child and Adolescent Psychiatry, Utrecht University, The Netherlands.

BACKGROUND: It has been suggested that the key variable in reduced plasma immunoreactive beta-endorphin concentrations in autistic subjects may be concomitant self-injurious behaviour. METHOD: We studied morning levels of plasma beta-endorphin in 33 learning disabled people with self-injurious and/or autistic behaviour. RESULTS: The beta-endorphin level of the subjects with severe self-injurious behaviour proved to be significantly lower than of autistic subjects without severe self-injurious behaviour (3.6 (1.4) pmol/l v. 5.8 (4.3) pmol/l; t-test: P = 0.045. Replication: 3.7 (1.1) pmol/l v. 5.7 (3.8) pmol/l; t-test: P = 0.043). Individuals with mild and occasional self-injurious behaviour were found to have beta-endorphin levels comparable to those without self-injurious behaviour. Further, subjects being treated with neuroleptics and lower beta-endorphin levels than untreated subjects. CONCLUSIONS: These results stress that in any study of opioid systems of learning disabled people, it is very important to differentiate between people with and without severe self-injurious behaviour. The results support the idea that severe self-injurious behaviour may be related to functional disturbances in the endogenous opioid system.

PMID: 8770438 [PubMed - indexed for MEDLINE]

Get a script of Naltrexone, and see if it works.

Self injurious behaviour has also been correlated with low cortisol levels. http://www.sciencedaily.com/releases/2000/01/000120073039.htm

Please get the neurotransmitters tested.

Anonymous said...

I forgot to add - low cortisol levels are associated with adrenal fatigue. I can't emphasize enough - please get the testing done ASAP.

Biomedmommy

Heraldblog said...

Hope you and Sam get your problems straightened out. Autism isn't curable, but there's still plenty of ways to help your son.

Anonymous said...

My middle NT son would chew his fingernails, toenails along with skin. We put him on Selenium and E supplement and it biting went away.
Wish I were more helpful.

Fore Sam said...

Wow, lots to consider. We've checked some of these things, EEG, diet, vitamin E. His doctor was concerned about possible seizures, especially since he rolls his eyes up so that they disappear but that was ruled out.

This biting usually starts with no warning. It's like someone flipped a switch and he goes from happy and jumping around to biting his hands and arms and screaming like crazy. Sometimes it lasts 5 minutes and sometimes 2 hours. When it's over, he just starts smiling like nothing ever happened.

I'm going to copy all of this and run it by his doctor since he, so far, has no clue. Sam won't point to anything to indicate what the problem is. He does point to ask for things but not when it comes to this.

I looked at the AS board and saw the thread on this. I had to laugh with one comment that referenced me going to Hell. I forgot who wrote it but I just want to let you know I'm not up to anything. The EOHarm list is political, not medical so asking about this there would be inappropriate. I have asked about it at Autism Mercury and never got an answer. Presumably, nobody there had an answer. I've been dealing with this for a long time. I worked with autistic teens in a facility who had skin like an alligator since they were just allowed to bite themselves all they wanted. Nobody there ever tried to stop them and nobody cared. I think this is one of those things that most experts think has no solution.

It's nice to see the opposition offering to help. I'll just say thank you and leave it at that. While Sam has received great gains from chelation, this problem has not got any better or worse. I'll keep compiling the advice and hope a doctor or two can make some sense out of it all.

Imagine listening to a baby scream for hours. Nobody could take it for long. My family has endured it longer than is reasonable. My younger son seriously wanted to stab his brother to make the screaming stop. Hospitals just refuse to even examine Sam so I tried putting the problem here in the hope of a solution.

Anonymous said...

The one time my son had a seizure it revolved around something called a laryngospasm. Very painful, very scary event but all MRIs and EEGs came back ok for 3 years after that. I started reading some articles I had on hand about biting and nonverbal adults and of course, infants, and I had one on GERD and biting and screaming. Here's the link if you allow people to post those (from a nursing journal) http://journal.hsmc.org/ijnidd/articlestemplate.asp?id=101&SearchType=&terms=GERD
Anyway, the article references screaming and biting as a way of dealing with the pain.

I do think it is pain related and I would not take no for an answer from a hospital. This is a quality of life issue and no one can tell it's not x,y, or z if they haven't tested yet. Remind them that while your child has autism, that sure as heck doesn't keep him from being in pain or being treated like any other patient--always evaluate and do a thorough medical history and exam no matter how stinkin hard it may be to do. I hope you get the help that your son needs.

Anonymous said...

That does sounds really terrible. I was thinking it was hand chewing or something more benign but it really sounds like some quick onset of horrible pain, like a migraine. I'm no migrain expert but I did get throbbing headaches that went away with diet changes - mainly cutting out dairy. Sam's problem sounds like totally different ballgame though.

Anonymous said...

Hello there, whatever you do, don't send your son to any institution. I know that it can be frustrating. My parents would be the first to attest to that. Institutions are bad news. I know a fellow autistic person who was institutionalized as a kid. Not only did he hate it, but his parents regretted their decision. As an autistic myself, thank God I didn't meet the same fate.

That's all I have to say. Do what the other commenters have told you. Just stay the heck away from the institutions.

Anonymous said...

Please look into having him scoped. He sounds like he is in a lot of pain. Have you taken him to Dr. Tim Buie at Massachusetts General? Please get him examined from someone who is an expert in autism and the underlying problems. NH is a state that is very far behind in their knowledge of biomedically related issues and good educational practices for kids on the spectrum.

I would also take him to a very good DAN doctor and get a comprehensive work up. This could make all the difference. Dr. Nancy O'Hara (located in Wilton, CT I believe) is highly recommended by many parents. He may have yeast issues and many other imbalances.

Anonymous said...

John,

I am very familiar with self-injurious behavior. My son is about Sam's age. Altough, I can't tell you we have completely stopped the biting it has decreased significantly. I believe in my son pain did initially provoke self injury. My son started with this about the age of 7 or so. We have had periods of intense SIB (Self- injurious behavior) and as you described it makes a normal life almost impossible. There was a period of time about 2 years ago I dreaded waking in the morning for fear of what the day would hold. More of the same self-injury my baby would inflict on himself. When attempting to stop the SIB sometimes he would turned his rage into aggression onto the person trying to help him, prevent him from harming himself. People really have no idea what pain it brings a parent to see their baby experiencing this. So John believe me I feel your anguish. It also explains a lot about your passion and your anger.

So, I hope to offer you some ideas to help you help Sam. I know you have been chelating Sam and I don't know if you are working with a particular doctor on this. As you mentioned I think these random outbursts could at times be a reaction to some unidentified pain. I also believe that once this pattern has been established other reasons could be "keeping it alive". I know from reading your writings Sam is unable to speak. Just imagine the frustration. So even if you have some other form of communication avaibale (sign or ACC device) it may not provide Sam what he seeks to communicate. He still can't speak like his siblings and other kids his age and if he hasn't adapated to another form of communication- that will be the biggest source of frustration.

So back to ideas, how are his bowels functioning? This was an area of major trouble for my son. Still can be. Parasties or yeast or gut dysbiosis? Get a stool analysis and see if anything is going on there. How about getting an MRI? My son's doc suggested that when my son was doing a lot of head banging. He suspected something called Chiari malformation. His MRI was read as normal. We went to see a neurologist thinking he might be having headaches. Really, when your kid can't tell you what's wrong it is hard to guess. He recommended experimenting with some meds which we never did use because the head banging really started decreasing around this time. My son has had a really horrible time loosing baby teeth. These SIB's increase when another tooth is coming out. He is now loosing his molars and we just had another little episode ourselves.

One thing we discovered is my son had an ongoing strep infection. When we treated this we saw a huge improvement in all areas.

John, it is going to be like searching for a needle in a haystack. You will have to systematically evaluate as best you can Sam's health. Gut, brain,and immune health- the works. I don't think any person who engages in this behaviors does it for one particular reason. God, I wish it was that easy. I would be happy to talk more with you about any of this. I just wanted to write and let you know you are not alone and I really hope you can figure things out for Sam so that he can stop this SIB. Give me your e-mail if you would like to be in contact.

Good luck John.

I'll be praying for you, Sam, and your entire family.

natesmom said...

Hi John,

I feel so badly for you. I am so sorry that you have to endure this...it must be painful to watch your son act out in such a way...and not be able to help him.

I agree with a lot of what the other posts have said. I would start testing...NOW. Find out what is going on in your sons body. Amino Acids, CDSA, organ function. Then I would call Dr Buie at Newton-Wellsley Hospital. Schedule an appointment ...yesterday. Call Newton Wellsley Hospital you will get an appointment faster than calling Mass General. Dr Buie is the second best GI doctor in the country (1st is Dr Wakefield) I would get Sam scoped and find out what is happening. Dr Buie is a very kind man.

I also agree with changing doctors (and I hope your doctor is reading this!) John, Irealize that you "like" your current doctor but when you consider "institutionalization" there is a definite problem with the efficiency of your doctor. If he cannot help you..he should be refering you to someone that can. PLEASE consider changing. We see Dr O'Hara's practice and she (and her staff) are fabulous. She is part of the think tank and she knows what is going on...They do not hesitate. They are in go mode. She will have tests drawn up and ready to go.


If I were you....and this is a suggestion. I would start writing a list of things that could be contributing to this behavior. Gastrointestinal (yeast, bacteria reflux) Then I would check on Allergies (food and airborn) Amino acids test for ammonia build up and oxalates, CDSA yeast and bacteria, I would also take a serious look at the supplements that he is getting and start to back off. Then add them in one by one after you get the test results back.
Honestly...a lot of what the DAN! practitioners subscribe for supplements, my son cannot take. He was a whirlwind last year. Sam could be an overmethylator, have trouble with sulfur supplements and digesting lipids (all three my son has I cannot give him any of those) Also check his thyroid. He could be having difficulty with adrenal function.

I would also SERIOUSLY consider doing Yasko's genomic test. This will tell you more information about Sam's genetic make up (and this information will never change). This is where I learned the most information about my son.

I would honestly consider giving Sam GABA (my four year old takes 750mg three times a day) it helps nuerotransmitters...it is very calming.

Lastly...please...do not send Sam away. There is no one on the face of this earth that will love him as much as you and your wife. You can do this. You just need some good people behind you. People that will help investigate what is causing him so much pain. There is a reason...and you just need to find out what it is. "Putting him away" will not solve his pain...it will just prolong his suffering behind closed doors.

You have given so many of us strength in our hours of need. Please know that we are here for you.

Anonymous said...

Has Sam been checked for PANDAS?

T.H. Huxley said...

I see many people have put aside their differences and offered suggestions. I, for one, find that to be admirable.

In addition to the excellent suggestions some have made, I would like to add that you possibly take your son to a pain evaluation and management clinic.

I would also be curious to know what physical neurological conditions he has been checked for in the past, including Arnold Chiari Malformation, tethered spinal cord syndrome, odontoid fracture, etc.

Personally, I believe you are onto something with regard to your son's pain. I hope you continue to pursue this angle. His attacks could also be a product of redirected aggression, imho.

Good luck to you and your family.

jonsmum said...

Hi John;

t.h. Huxley said:

"His attacks could also be a product of redirected aggression"

For what my opinion is worth, I think this is possibly most likely to be the root cause of Sam's biting. Either this, or a sensory reaction to a 'trigger/s' that cannot be identified.
My own son went through a period of biting himself and others, but fortunately it was short lived and he now screams for hours on end, every day.
I know how it feels to hold your head in your hands waiting for 'it to stop'.
As with Sam, any attempt to comfort him only sends him into a rage.
I can only imagine how soul destroying this must be for you and your family to helplessly watch your child suffer day in day out.
I'm sorry I can't suggest any solutions, but as others have said, my heart goes out to you (always has), and every other child and their families going through this hell.

Anonymous said...

I'd go with the migraine hypothesis. I'd also have his teeth checked. I don't know how you feel about a chiropractor but his neck could be out of alignment. That can cause a boatload of other problems.

Jack

EvilZakkie said...

Hi John,

It's probably no secret that I'm not a fan of your blog (if you remember some of my comments - it was a long while ago), but this seems a bit bigger than that, so I thought I'd try to think of something actually helpful.

Self-biting and other similar behaviours are a form of stimming, designed to release frustration, in this case possibly as a result of pain. There's also plenty of harmless forms of stimming that achieve the same effect - like rhythmic tapping, banging on walls, spinning, rocking, etc. If Sam exhibits any of these, is it possible to encourage him to release frustrations using these methods, lowering his dependence on self-biting? I know that I've ceased some of my own harmful stims (like loud repeated coughing or throat-clearing) by replacing them with harmless ones (like flicking my toes together, etc).

As you said in your post, it may turn out to that not much can be done until he is able to communicate what the issue is. Another possibility along this line may be to see if he's a candidate for facilitated communication (http://en.wikipedia.org/wiki/Facilitated_communication).

This really must be heartbreaking for you to deal with. I know that most of your posts are born of frustration rather than any actual hatred of autistic people. I sincerely hope that things work out well for you and Sam in the end.

Anonymous said...

This is the first time I've been to your blog and know nothing about it or you except that I have been there watching and being helpless to do anything. For us it was several nights a week in the middle of the night 2,3,4 am. I would have to sit there with my heart breaking watching him wail and writhe around on the floor kicking and banging his head. We were lucky in that it was severe gas brought on by food sensitivities and on the diet it has stopped.

People have suggested migraines. But my understanding is that there are things that lead up to one and you stated that it was pretty sudden.

I know this sounds a little heartless but one of the things that helped me pinpoint what was wrong with my son who is also not verbal, is that when he started having these attacks I would put pressure on various areas on his body (arms legs chest neck ears teeth)to see if I could get a reaction that would tell me where the pain was. When I pushed on his belly I got a violent reaction and so knew that this was the source of his pain which made figuring out the underlying issue much easier.

Also something to keep in mind it may be completely unrelated but there have been connections made between Autism and ADHD things like the GFCF Diet working for ADHD kids as well. This is the point, some ADHD kids especially boys when they hit puberty will have out of control rages. My understanding is that it is mostly hormonal. Now I have no idea how western medicine would deal with this except to put that child on Ritalin, but a Homeopathic Remedy I'd heard of is St. John's Wort to keep the aggression under control. However there is a specific ratio based on body mass so I'd see someone who knew the correct dosage before trying it. I know that this is an issue from my own childhood when my brother who was ADHD and on Ritalin came after me with a knife. Many kids with Autism also have other disorders right along side the Autism. Anyway it is something to consider in the long litany of things to try that you've received from other people. I truly hope you are able to pinpoint the problem and help your son. I feel that few things are more difficult than seeing your child in pain and not being able to do anything to help them. How lucky he is that you are there working so hard to help him.

Anonymous said...

John, Sam is lucky to have you as a father. You'll do your best to find out what the problem is and I have a feeling there is a solution to it. My son isn't sick but I remember a few nights where I wanted to leave him in front of somebody's door steps because of constant crying; I can't imagine what you're going through.

It's nice to see that the flame wars have died down and people are supporting you. You're human and your feelings of wanting to give up are normal. I'd also recommend that you and your wife get counseling, I know it has helped my friend who has an autistic child.
-Maxima

Anonymous said...

Its possible that he is creating pain in 1 area to get his mind over pain in another area.
Also how is his general sensitivity to main.
Cool.
Srinath

chaoticidealism said...

Is he hurting himself physically (drawing blood or causing severe bruising)? Or is it just biting?

The reason I ask is that sometimes biting yourself can be rather comforting. I do it myself sometimes, and it's not a matter of pain, just distraction from something that's a bit overwhelming (bright lights, scratchy clothes, unexpected events, whatever). I've never left worse than mild bruising on my skin, though; like I said, the goal is the sensation, not injury.

If he doesn't want a rubber substitute, it's likely he's looking for the actual sensation of biting *himself* rather than just biting something in general. Does he like deep pressure? Would a hand squeezing his arm help? Something that mimics biting... but without the damage.

Fore Sam said...

Once in a while, he does draw blood. He has scars all over his hands and wrists from it.

We had a day with no biting yesterday, altered the supplements slightly and he drank ginger ale, which he hasn't had for awhile which could have been good for his gut if that was the cause.

He chews on things all the time but this seems to go beyond any sensory issues. The screaming, crying and tears are pretty good indications that he's not enjoying himself at all.

Physically, he's strong as an ox and is never sick aside from a cold.

He never used to feel pain until after we began chelating. He burned himself on an exposed heating pipe once and never flinched. He's never really been injured at all since he has incredible balance. I've never seen him trip and fall, not even as a baby. The only time I saw him in any pain was from a bad tooth.

Anonymous said...

Perhaps this thread, with your honest and heartwrenching discriptions of what it s truely like to deal with autism will shut up the 'don't cure us we are fine' camp.

It reminds me of politicians who send kids off to war but do not go themselves and claim, it ain't so bad out there!

Fore Sam said...

I saw on Autism Speaks that some offered constructive advice while the hard core lunatics insist Sam has problems because I'm a horrible person.

I think that attitude helps identify the ones who belong in padded cells. And they wonder why I thoroughly trash them here, ain't no reasoning with mental cases.

Anonymous said...

"Physically, he's strong as an ox and is never sick aside from a cold."

I know it sounds backwards but out son is like that but there is still a problem with his immune system. It is like the immune response is not manifesting itself to help clear things out. Mosquito bites for one thing, do not show on his skin, but he is always pulling my hands to scratch his skin in different places so there is still some type of discomfort all over his body. Colds, even though he rarely gets them, can last for weeks.

Now after months of diet and treatment we are finally seeing mosquito bites - never thought that would be a good thing.

Anonymous said...

Hi Mr. B,

I took down what I said about you over on AS because I realized that whatever you say on your blog, I don't know you as a person and I shouldn't be commenting on your personal life.

I apologize.

LittleBoPeep

Fore Sam said...

Little Bo Peep,
People who are opposed to helping cure autistic children are 100% insane. If you include yourself in that bunch of lunatics, you can feel free to say whatever you want about me. I'm trying to help my son and would like to see ALL people with autism cured. That includes those who don't have the brains or common sense to realize that their brains have been severely damaged. Trying to help those people is like trying to pluck drunks out of the gutter and keep them sober. Just as I would not care what a drunken bum said about me in his stupor, I care even less what anyone says about me who has the balls to knock what I say about helping disabled children.

So, you go right ahead and call me all the names you want. You and your inane attitude belong in a padded room right along with the Neurodiverse frauds, simpletons, lunatics and liars who spout their ridiculous gibberish about doctors who cure autism being quacks. Just so you know exactly where I stand, I don't want any lunatics on my side. I don't want their friendship, sympathy or pity. If they have something useful to say that may benefit my son, I'm thankful and I will listen to any comments that may improve his condition. I will also be happy to advise them how to help their own children instead of keeping their heads up their asses while they allow their kids to rot in the God damn Hell of autism because some fat, fraudulent, pig of a woman named Amanda Baggs says so.
You are not going to see me looking for any middle ground with lunatics. Autism is a nightmare and every possible solution should be explored to cure it. You will not see me apologizing to anyone like Kevin Leitch who is a lying, sneaky, scoundrel who spread lots of false information about autism and the people who help autistic children. Watching my name smeared by psychopaths just makes me feel good about myself so do it all you like.

Anonymous said...

It seems Amanda will be on CNN again tonight. She claims they wanted to make a one hour special about her life. Have they still not checked out her background and figured out she is a fraud?

chaoticidealism said...

Don't cure us, we *are* fine! But we never said we wouldn't accept treatment and education.

Anonymous said...

Is there any way you can get referred to the Mayo Clinic?
http://www.mayoclinic.com/health/autism/DS00348/DSECTION=6

Anonymous said...

Hey man,
I know people are offering various options all of which sound excellent, however I have to imagine that some connection between his action (biting) and the consequence (pain) and the resulting screaming has to be missing. I think some part of his brain has a communication block. For example, I dont feel cold while I am standing in freezing cold weather. For long periods of time. Then I will walk in the house, and collapse into a shivering fit. Some thing is back asswards. I hope one or more of these ideas work for you.
Cool.
Srinath.

Fore Sam said...

Srinath,
Sam never used to feel the cold either but he does now. I think he was able to feel it about the time he started feeling pain. So, maybe the chelation unblocked some pain pathways.

dgdavis said...

Hi John,
Please don't be so hard on LBP, she did apologize after all and remove her comments. :)
To the biting, are you giving Sam zinc? If so do you think it's enough? Zinc or magnesium deficiency can cause chewing or biting. Some kids will chew on their clothes. You've had many good suggestions here but this was the first one I thought of and it's relatively easy to add and see if it helps. Are you giving Sam MB12 injections? With the chelating, it may be causing a yeast overgrowth. Three Lac, Candex, Culturelle are some good probiotics you might want to try. What kind of activities does Sam do for exercise? Does he have a trampoline? Jumping can be really good for ASD kids.
There is also a wealth of information on AutismWeb regarding biting and chewing. You could go on there and search the word and read what other parents have encountered and what's been helpful for them.
Someone said this is like finding a needle in a haystack. What an understatement that is. Also, Dr Yasko's genetic testing was very helpful for us even though it was expensive. You don't have to follow the entire protocol, but the information you get will help you with the supplementation Sam needs and you won't be buying a bunch of things that he doesn't need. Dr Yasko's parent forum is excellent as well HolisticHealth.com. I hope some of this helps and you all have a good Thanksgiving! Will be keeping you in my prayers....XXOO Love, D

Fore Sam said...

DG,
Yes, I use zinc and magnesium and I think they have been helpful. I'm starting to think the supernuthera is making the biting worse. There's so many different things in that that it's impossible to figure which one of them might be the problem but the biting seems to get worse on days that he has it.
Maybe I shouldn't have gone off on LBP. I suppose I'd have to meet her to see if she's as crazy as she sounds sometimes. When you see people knocking you in places they know you can't answer though, it says a lot about their character, or lack of same. At least anyone I slam here is free to show up and give it right back to me if they want.

LBP shouldn't take all I said personally as it was more of a shot at everything that Neurodiversity stands for and not intended as a personal insult. I mean, anyone associated with ND has a screw loose somewhere.

Anonymous said...

chaoticidealism said...
Don't cure us, we *are* fine! But we never said we wouldn't accept treatment and education.

Mon Nov 19, 06:23:00 PM EST

No. I wont say that either. OK I'd say, give us good teachers who know the subjects and dont teach us useless crap.
Cure us (for the vast majority of autistics out there) but dont destroy our personality, cos its sure as hell hard to find another like it.
Cool.
Srinath.

c.darwin said...

Here is a statement that I think will really help you John, I said I would help you if i could.

People say, I don't hate my child, I hate what autism does to my child. Autism does nothing to your child. Autism is your child. Your child is autistic. c.darwin

The only cure for autism is acceptance.

Anonymous said...

Don't institutionalize Sam, at least not before you please do the following:

1. Contact one of CNN's competitors about this and don't quit until somebody listens.

2. Get the CNN competitor to invite (on camera) that sonofabitch Gupta over at CNN to a little 'meeting' with him you and Sam and Amanda Baggs, to take place at her apartment.

3. Regardless of response (if Gupta is too chicken-shit to show up or respond, record that then, Amanda will go for it as its another opportunity for attention scamming). Travel (with competitor camera crew in tow, carefully video-taping the "Joy" of Sam's autism as displayed by him as you travel etc), make your way directly to Baggs' apartment.

4. When Sam goes on a screaming/biting spree, sit Sam directly on either Baggs' or Gupta's lap and stand back, allowing competitor TV station/news close range as Gupta and Baggs deal directly with the 'joy' of Sam's plight.

williams_dad said...

Someone mentioned vitamin E so I'll add my 2c on that. Most E supps are d-alpha tocopherol which is OK but there are 8 types of vitamin E - Four tocopherols and four tocotrienols.

dl-alpha tocopherol is synthetic and it's usefulness is doubtful.

To get all eight types of vitamin E we make a massage oil of 50/50 wheat germ oil and rice bran oil mixed in with Olive oil and as a base we use coconut oil. He loves it rubbed on his back.

I wont supply the references here but needless to say it will supply all 8 vitamin E types, a heap of fatty acids and many other goodies as well.

Our son sounds a lot like yours John in many ways re-self harm but overall healthy too. It could be anything but you have my sympathies as many a time I have put my hand between my sons head and the wall he was bashing it against.

regards
WD

Fore Sam said...

C Darwin,
Since you are one of the loopier loons who has no relationship with reality, I wish you'd keep your idiotic advice to yourself.

Fore Sam said...

Williamsdad,
We stopped Sam's head banging shortly after it started with vitamin C. He had bashed holes in walls all over the house and never banged his head again after giving him more of it.

I'll look into the vit E we give him. Thanks.

williams_dad said...

That's interesting John about vitamin C, you do realise that you can give quite large doses of the stuff, like grams not milligrams. And it pays to use buffered vitamin C rather than ascorbic acid.


WD

bullet said...

It might be worthwhile (if you've not already done so) checking Sma's potassium levels, as a deficiency in this can cause cramps (which do come on suddenly and might partially explain the appearance of biting for no reason. Moreover, potassium can also help with migraines (obviously other things are needed as well), so if he is having migraines then sufficient potassium might help to alleviate the pain.
Obviously don't just take my word for it, get the possibility checked out first.

Anonymous said...

John, I cant help but think chelation removed mercury from somewhere partially where it was blocking all sensations and pain, and what is left is only letting part of the sensations and pain through, or causing pain where there was none or what not. I cant help but think chelation till you get that part out is the solution, however when and what and how are you going to get that part of his brain chelated - no idea.
BTW, Littlebopeep attacks you, you attack her back and then she withdraws and you're the bad guy ??? WTF, that is the dumbest thing I have heard. Her retraction may or may not create a retraction in your post, I dont see what this or that are connected.
BTW, the neuroinsane take everything so faaaaar off context and twist everything you say and what every one of the biomed-ers says that its near impossible to tell what is going on or stop yourself from slapping the crap out of them verbally. Morons. She can retract it all she wants, your retraction is your call. Just what I think.
Amanda Baggs is a moron and a fraud. However all autistics aren't like her or the other Neuroinsane morons.
I really wish the better chelator (haley's Adenosyl 2 lipoic acid) will come out and he inexpensive to boot, cos I need a whole gunny sack full of it. ALA is $$$ and R-ALA is never available on the shelf anywhere.
Cool.
Srinath.

Fore Sam said...

Srinath,
Don't take this to the bank but I thought I read sometime back that R-ALA should not be used. I just use the stuff off the shelf for $6 a bottle.
LBP probably saw what an ass she had made out of herself and decided to apologize. It's sort of like getting an apology from a drunk out of the gutter who just puked on your shoe. You can't take the Neuroinsane too seriously.

You notice the neuronitwits have to take my words over to AS where they know I can't comment to put them in their place. They don't have the guts to try to argue with me without moderators to help them out.

I've run into a few people with Asperger's who are reasonable. They don't run around defending drug companies and calling doctors quacks who help people with autism. Amanda Baggs and her cult are very sick bastards.

dgdavis said...

Well I'm not sure which SNT product you're using. Did you get it from Kirkmans? I looked at the ingredients of the SNT they sell and the only problem I can see is with the Folinic Acid. He may not be able to handle this. This was the beauty of Yaskos genetic testing, it let me know my son didn't need any GABA and explained why when I gave it to him he went so bonkers.
But I do think from what you've said that Sam's biting is stimming from a mineral deficency whether that be zinc, potassium or mag. I would get some mag at holistic heal.com they have a liquid that's about 10.00 and it has a natural calming effect and helps reduce constipation as well. Also, if you are using the SNT from Kirkman's , most of those ingredienrs are synthetic crap. You should be using plant based supplements that you KNOW the body will absorb. If you're spending all that money on supplements and they're getting flushed down the toilet, what good are you doing? I know people recommend Kirkman's for ASD kids but they add lots of trash to their supplements that our kids don't need. And don't let Sam have any artificial sweeteners like Splenda or Aspertame, these are awful. I'll put together a list of the supps I'm using for my kids if you'd like with the websites. It can be done without breaking your bank.
I do think the best way to approach this issue is to start with the simplest things first that could be the cause, like diet supps etc.
Then if you determine it's not diet related, you can go into some deeper investigating like the genetic testing, and doing a GI scope. Just my thoughts about Sam, I hope I made some sense.
:) TTYL, D

Fore Sam said...

DG,
I used to use liquid SNT, stopped using it for about a year and now tried the pill form. It always seemed to help him when I was using the liquid. He gets zinc and magnesium and eats a banana once in a while but I don't give him any potassium. Maybe I'll add in some of that. I gave him more biotin and acidophilus lately which may have helped.

Anonymous said...

No R-ALA eh.
In that case, I might as well run out and buy the largest tub of ALA I can find.
If I can get it ~8-10c a 200 mg pill I think I am good.
Yes, Littlebopeep must have had hater's remorse, and tried to back out of it but not before others had caught on, nothing as pathetic as the furious back pedalling making you skid and fall and have no effect of backpedalling either. Love it. Morons.
Cool.
Srinath.

Anonymous said...

Here is another comment about the diva. Straight from her sig line on autismspeaks.
You cannot use Dr Mercola's assensment of lupron to trash lupron, and then use Haley's assesment of herbal treatments to bash Mercola, and use Dr Neubrander's assesment of chelation as a treatment option to bash Dr Haley.
Why ???
Let me expain somehting to you since you're the genius that came up with "Cyanide and cobalt" for cyano-cobalamin.
You want to buy a car.
Walk into a GM dealer and ask him about the Ford Mustaang. he will trash it, walk into a Ford dealer and ask him about the corvette. He would trash it. Ergo, you will now have to be walking. So if you've ever owned a car, you lose your right to use the line of reasoning that is currently your sig line on AutismSpeaks.
You're very transparently pathetic, atleast try to be more opaque. The autistic kids and adults who have some comprehension capability, any comprehension what-so-ever are laughing at you. Moron.
Cool.
Srinath.

williams_dad said...

Hi John

you said
"Don't take this to the bank but I thought I read sometime back that R-ALA should not be used."

I'm not sure that is correct as R-ALA is the natural form of ALA, S-ALA is the other form and is synthetic and according to some not as effective as R-ALA. However the body can use both.

http://lpi.oregonstate.edu/infocenter/othernuts/la/
http://www.umm.edu/altmed/articles/alpha-lipoic-000285.htm
http://en.wikipedia.org/wiki/Lipoic_acid

hope this helps
WD

Anonymous said...

Since many years of chelation haven't helped, have you considered that it has actually made things worse? No, that would be proof that autism isn't mercury poisoning and that chelation doesn't cure it.

Your ego is more important than Sam's well being so you could never stop chelating and think of him as something other than mercury poisoned.

What did Andy Cutler have to say about this?

Fore Sam said...

Anon,
I'm going to leave your cowardly comment here as one more bit of proof as to the insanity of neurodiversity.
You have undoubtedly seen me say that Sam has improved tremendously due to chelation. There is still work to be done. Only a total jackass would try to claim that chelation has not helped my son, thereby calling me a liar. Would you like to call me a liar to my face?

Anonymous said...

Anonymous said...
Since many years of chelation haven't helped, have you considered that it has actually made things worse? No, that would be proof that autism isn't mercury poisoning and that chelation doesn't cure it.

Your ego is more important than Sam's well being so you could never stop chelating and think of him as something other than mercury poisoned.

What did Andy Cutler have to say about this?

Tue Nov 20, 05:32:00 PM EST

You dumbass ...
I have a kid who at 3 did not speak a word.
Today he chatters non stop, sings albeit without much voice modulation right now, is fully potty trained and except for screaming fits for random things that would probably be physically impossible like he's leave his popscicle on the table. He wont eat it, he will wait till most of it is melted, and scream that its melted. He wont let you touch it or move to the freezer. That kind of screaming he is indistinguishable from any of his peers.
I chelated him for a total of 6 months, 3 months on a 1 on 1 off days of oral DMSA and 3 months of a very very low dose of TD-dmps and we did lupron for 18 months. He is a little fuzzy on the laws of physics and some concepts of space and time, is very super hyper in most cases, but is otherwise very very much like kids who are 5. He'd turn 5 in 2 months.
I'd compare chelation to picking up sand from the floor in a dark room using a foreceps. You're going to have to start somewhere, clean it up, stand up and look around you, and start at the next spot. Its not perfect, its just the best we have. The vacuum cleaner is yet to be invented. Unless you are here with that proverbial vacuum cleaner, or atleast a broom you should shut your cake hole or open it wide, I dont care and bathe in some mercury. That might clean out the gene pool.
Cool.
Srinath.

Anonymous said...

John,
My son was a biter. We developed an ABC chart:
....A=anticeden
....B=behavior
....C=correction.
We paid close attention to what our son was doing, what was going on around him, even the time of day & our exact location just prior to the biting.
Once we identified the stressors preceeding the behavior, we were able to intervene & correct it. Usually we gave him something he could keep in his pocket that he could rub his thumb on, a rough texture like a piece of velcro, I think pain releases endorphins & stress is lowered in the process.
Overstimulation was usually the culprit in our case, once we were able to see it coming, we were able to avert disaster.
Our son got so stressed out in his old school, he would come home, remove his shoes & proceed to chew all the skin off the heels of his feet, leaving them bleeding.
When I went to investigate, I found he was being called "the slow slug, loser, dufus...." he had reached the point where he was aware enough to know what these words meant, and that they were directed at him.
We removed him from the school & began homeschooling him.
His ability to follow commands was nil & his expressive language skills weren't much better. 4 or 5 disjointed words, he knew what he wanted to say, just couldn't get the words out right, it so very frusrtating.
That's about the time we noticed he was showing signs of puberty, at the age of 8.
We contacted Dr. Geier & began the lupron protocol, the results were nothing short of amazing.
In 9 months, his speech went from disjointed 3-4 word expressions, to 12- 14 word sentences. His ability to read & comprehend went from k to 3rd grade. I know that one on one attention helped, but the lupron decreased his aggression & helped with disruptive behaviors. It freed him up to where he could concentrate.

For those of you that think lupron is a form of castration, we never even got his testosterone levels down to normal, much less zero. So don't even try to give me that crap. He was able to tolerate DMSA by mouth, the amount of toxic metals removed from his body were stunning. All the while, his ability to communicate grew by leaps & bounds.
After 9 months on the protocol, we no longer saw any gains & halted treatment.
He still asks for a shot some days when he has what he terms "brain fog." But, by & large he's much better. I worried he'd regress, but he hasn't, and we've been off the protocol for a year now.
He asked to go back to school this year, just not the old one, so over this summer we moved to a county where the services are better. His teacher only has 4 students & she is so good with them. I thank God for her everyday.
John, there is hope, I remember spending all-nighters, holding a screaming child until I thought I'd lose my mind.
People can bash Dr. Geier all day, hell, go ahead & bash me too.
All I can say is, it worked for us, and we're thankful for it.
My son helps the other kids that are struggling in math, he has friends, sneaks sidelong glances at the adorable little blond seated across from him, smiles that goofy 10 year old smittem boy smile. She smiles back.

So you just bash away, I don't care. My son has friends, makes jokes, helps the other kids at his table with big words, or math.
No more self injurous behavior.
No more screaming.
No more violent outbursts.
For us lupron & DMSA were a God send.

I hope you find the combination of treatments to relieve your son's pain, I truly believe if you can find the cause, you can find the remedy. Then your child can change his focus from pain, or whatever it is that has his undivided attention and he will be freed to focus on being a kid.

Fore Sam said...

Anon,
Thanks for the good words about Lupron. I'm glad to hear you get good results.
We're making progress, it's just the damn biting that we can't put a finger on.
Sam wrote his name yesterday, all by himself and with no prompting, the first time I've seen him do this. So, progress continues.

Anonymous said...

Make sure never to allow your doctor or district to place him at New England Center for Children in MA. They believe in nothing biomedical and I understand that they continually tell parents any dietary intervention or anti-vaccine belief is a bunch of voodoo science. The ignorant parents there must actually believe this. They would love people like Autism Diva and Estee Klar.

Anonymous said...

John,
It really wasn't about Lupron, it was about finding the combination of therapies that work for your child.
I do wish you all the "best" (sorry for the pun)
I pray your son will continue to improve, and that you'll find the elusive clue that brings an end to his biting.
God Bless.

Anonymous said...

Diva has been oddly silent.
No post on her blog in almost 2 months.
Not like her to be quiet. Bashing parents is evidently a full time job.
Wonder how she finds the time, with an autistic child & all that.
Makes you wonder, doesn't it?
I wonder if all that love & acceptance finally caught up with her.

Fore Sam said...

I don't know why Autism Dingbat hasn't had much to say. Maybe she's slipping into Alzheimer's.

GivingThanks said...

i wonder if sam's mouth hurts.

I once saw you talking about the progress he'd made with being able to hit a golf ball with you.. the day he tracked the ball and smiled vs his prior mouthing the club's grip to the oblivion of all around him.. and the continuing issue here being oral on both counts (screaming and biting).. common denominator in all of these being his mouth involved, makes me wonder, could he have TMJ (I can't think of what that actual.y spells out but it involves extre3mely painful shifts, of the jawbone I think) or something related. I know getting a severely autistic kid into a dentist's chair is no pip, and they (dentists) tend to stop at the usual dentistry stuff dentists do, but the 'light switch' on and off aspect to this as well as there currently being no associated rhyme or reason (instinctively I trust that your family has already been scanning for any clues and finding none) something physical taking place that would explain the huge variances in duration would also kind of fit there too I think.

Think back to when Sam was teething as an infant, was there anything in common there, did you see any starts or stops to anything like this then?

Id say reduced sensitivity to pain might make his hands and arms (which are always readily available to him) the easy targets for this outlet, but I'd really look super closely at face and mouth structure stuff, it does sound very much like its a pain response.

Has he had any growth spurts lately?

could he be suffering from ear infections? did you, your wife or do any of your other kids experience childhood earaches?

thats all I can think of for now for possible causes and I'm sorry I can provide no solutions.

John Best,
it takes a monumental amount of courage to have yourself out here as the target these asshats prop up to focus and funnel all their rage and discontent towards you for your stalwart insistence on speaking common sense and truth.

You're not perfect, you're human, and that fact clearly shows, but in the course of it, that you are clearly real shines through, and the guts it has to take to face off all this crap at the same time you do what you can for your son says huge volumes about you, strong powerful volumes.

Not everybody that supports you is out here posting, but please know that you are not alone, and the groundbreaking you do in getting the truth out and shutting these scam artists down is important. Never stop.

Even as Sam makes huge leaps and bounds, I know you will always be here, fighting the good fight.

I know you won't forget those who live this lifelong battle, and its you who's actually been here for those truly afflicted with severe autism.

On behalf of them, please accept a profound thank you.

You and your family made their way into at least one household's thanksgiving prayers this year.

Never quit, for the sake of all the truly autistic out here.

Fore Sam said...

Anon,
Thanks, I found it hard to believe that anyone seriously opposed curing autism when I first heard of these loons a few years ago. They've been afraid to say very much to me since I started publishing the truth about their phoney actress, Baggs.

Others have mentioned the jaw thing too. Sam does do a popping type of thing with his jaw and uses my arm to give himself pressure so I'll check that out.

Anonymous said...

That is so nice to hear about lupron.
Dr G says that older and closer to puberty kids respond more readily to lupron and are more sensitive to it.
And nope, we never steadily got the testosterone to drop to even under 10 - the detection limit. I think one time it did, but all the other 18 months we are 11-20. For a 5 year old, that is high IMHO, but its still effective. It causes glutathione to go up and that starts the detoxing process all by itself. DMSA or DMPS will just accelerate that process. I have been overly cautious with DMSA or DMPS I think. I am hoping the haley's chelator comes soon so I can get him and myself on that.
Cool.
Srinath.

Anonymous said...

Hey John,
We just figured out somehting.
Santosh has had a rash off and on for over a year. We went GFCF but the rash was not responding to that. We just figured out it may be due to food coloring. 1-2 days after eating food with color it comes up. Goes away with steroid cream ... very quickly if it was just 1 time infraction. Just thought I'd share.
Cool.
Srinath.

Anonymous said...

While others have stepped up to offer advice and suggestions,

what has been Baggs' response to Sam's plight?

As you might guess:

http://ballastexistenz.autistics.org/?p=466

(she's simply imitating it)

Anonymous said...

Someone please tell me how I can get my son's doc to prescribe Lupron!!

Fore Sam - here's one thing that helped with our son's aggressions somewhat and outbursts. We assumed that they were happening because he couldn't communicate his frustrations, etc. Before he could communicate verbally, we started PECS training and this helped him communicate as well as taught him the value of communication, i.e., getting what he wanted or needed. He soon began to verbalize these things and we were able to wean him from PECS. Once you start the PECS or any picture communication system, you could make a board or small book with "I am feeling _______." And have pictures with words describing feelings for him to use to feel in the blank. Maybe start with only one or two feelings, say happy and sad. If he is obviously happy take him to the board and physically prompt him to use the picture to fill in the blank and reward him for doing so. Fade the prompt and do the same for "sad" if he is crying, etc.

Hopefully, eventually you would be able to add more feelings, especially the ones that are causing him to bite and have outbursts and give him some means to get through the frustration or anger or whatever feeling is causing the biting before it happens, i.e. taking a break, taking a walk, deep pressure - whatever your son likes as a stress relief.

This has helped our son tremendously and now he's able to verbalize when he's upset or frustrated and ask for a walk at school, or a snack or whatever he needs to prevent a meltdown.

I hope this helps.

We took our son to PECS daycamp in New Jersey. They are based in Delaware, but you could get the books and/or boardmaker online and not need training really to use it. Picture Exchange Communication System

Fore Sam said...

Anon,
Thanks, we've been trying to use PECS for years with minimal results. He uses a touch talker now, sometimes.

Philip said...

Anonymous said that Amanda Baggs is imitating Sam's plight. She is most certainly not. She is in considerable pain and distress. I'm very glad that there are compassionate people posting on her blog who are concerned about her, and want to help her.

Fore Sam said...

Philip,
She deserves lots of pain. Good!

Anonymous said...

In order for Baggs to get one iota of what she deserves it would have to at very least begin with her being forced to make that last YouTube movie

complete with full admission of what she's done, the complete truth, made verbally and while standing on her own two feet, followed by a lengthy apology to all she has harmed with her fraud.

Amanda Baggs deserves her very own rendition of Deliverance in which she can at last give an authentic 'squeal like a pig' (to match her appearance)

Ultimately, Baggs would make a real nice addition to the bottom of a suspension bridge's cement supports.

At last she'd have found the only way for her to finally be a contributing member to society.

Anonymous said...

Phillip, she most certainly is imitating Sam (or perhaps some other hapless person's plight whom she's happened upon -- I seriously pity each and every one of her neighbors in that elderly and disabled housing, what a panacea of stories Baggs has to draw from there).

Everyone knows there is not one single solitary original thing to eminate out of your pet pig.

Everyone else on the planet, even including you Tardboy, manages to have their own collective 'individuality' shall we say? Everyone that is, except for this cretin who has never been and will never be anything more than a composite of any interesting attention-seeking victim/patient aspect of anything she can get her hands on.

Give it a rest tardboy, the facts and people to see and be aware are coming forth every day, more and more people are using their common sense before anything else when they see her antics and the mounting evidence is there to support it.

She's scammed millions of people, now that's millions of people she's got nothing she can do but sit and squirm as more and more of them discover what common sense tells them in the first place.

If autism were so great, then why was it necessary for you asshats to construct a fake LFA individual to spew this shit in the first place?

Oh that's right, because

there is no one out there severely afflicted with autism who can express their own thoughts who would ever express such bullshit because they are severely disabled and hurting and they know it and don't want to be that way

She deserves a lot more than she's getting right now and if there's any justice one day she'll get a lot more.

These are real people and real people's lives you fucktards are playing around with and one day if there is a God it will all come back to you one way or another.

Helena said...

My son has autism. When he was younger, he was extremely hyperactive and aggressive and would bite his hand repeatedly. Sometimes he would bite others too !

I was at the end of my rope too !


This may sound strange but...

When he was 16, he developed seizures. He takes seizure medication, but still has seizures on a regular basis [about every 10 days.]


His hyperactivity and aggressive behavior and hand biting stopped when the seizures began... There seems to be a connection between the seizures and the behavior. He does not take any other medication besides the seizure medication.

Now he is 33 and still lives at home... no hyperactivity or behavior problems... unless he goes more than two weeks between seizures... then the bad behaviors began to surface again... until his next seizure settles him down.


Has anyone here heard of this before ?


I have heard that some promote
electroshock therapy to help autistic behavior... that sounds barbaric... but based upon my own experience... I wonder ??

Anonymous said...

" Fore Sam said...
Little Bo Peep,
People who are opposed to helping cure autistic children are 100% insane. "

Y'know what? These "Insane" people spent THEIR time to try and help you what do you do? You call them insane, you call them nitwits and even recently, you posted a blog about trying to take a perfectly happy child away from their family. I believe that deep down, you are a good person but these people wrote to you to HELP you because they are CONCERNED for you! How can you throw that kindness back into their face like that?!

wolfe said...

You should actually love your son instead of threatening to put him into an institution, ranting away at your computer, and hating aspies and people who support certain things. Do something nice for him, show him you care. Instead of showing the rest of the world your hate.

Regards,
Theri

Anonymous said...

Oh my. I can just feel your anguish. Please, PLEASE consider his diet! Many of these children are in legitimate pain because their guts are inflamed. My son has been helped tremendously by changing his diet and taking him off all gluten products, all casein products and all cereal products. Please check out the following website:

pecanbread.com

Also, read the books "Breaking the Vicious Cycle" by Elaine Gottshall (sp) and "We Band of Mothers" by Judith Chinitz.

I can almost guarantee you, you're son is suffering from excruciating pain in his gut and his way of expressing this is through his biting and his screaming.

My thoughts go out to you and your family.

Foresam said...

Thanks. I solved the biting about a year ago and wrote another post about it. I believe the solution was chelation and paying more attention to making sure the liver was working properly, milk thistle.
That's just my guess and I'm just glad it's over with. CoQ10 may have also helped.

Foresam said...

To the Pharma shill who was trying to comment here anonymously with pure bullshit,
You have to give me your name if you want to lie about the cause or cure for autism. Then I can expose you publicly for the lying piece of shit that you are.

I doubt you have the courage to leave your real name with your comment.