Self-Injurious behaviors and autism

I have often heard that about 20 to 30% of individuals with an autism spectrum disorder (ASD) will exhibit significant symptoms of irritability and/or aggression including quickly changing moods, severe tantrums, and self-injurious behaviors (SIB). These behaviors are more prevalent in low functioning individuals and/or those that are non-verbal. Medications like antipsychotics (also known as neuroleptics), although largely ineffective in treating anomalies of social interaction and communication, are often used to treat these symptoms. Side effects (e.g., weight gain, sedation, new onset diabetes, elevation of serum triglyceride levels) of these medications may be significant and limit their acceptance by parents, especially when given over long periods of time.

Self-injurious behavior, in particular, is the most significant problem faced by a number of ASD individuals. These behaviors include head banging, hair pulling, scratching, hand biting and even eye gouging. Biting of the lips, tongue, and fingers is more characteristic of a syndromic form of autism, i.e., the Lesch-Nyhan syndrome.

Self-injurious behaviors are upsetting and frustrating to parents and health care professionals. Indeed, once they are evident it is difficult to leave affected individuals alone for fear of significant injury. The constant vigilance and consequent tension is only superseded by the feeling of guilt if the child injures himself/herself.

Laura Schreibman in her excellent book “The Science and Fiction of Autism” describes the case of a boy who exhibited SIB. Knowing that this was the case for their son, the parents removed anything from his room they thought could harm him. Despite due diligence the parents unfortunately forgot to remove the metal frame of their son’s mattress. One fateful night the child’s repeated head banging prompted severe brain injuries and ultimately his tragic demise.

Head banging is a common type of SIB in ASD and does not require an object from the surroundings for it to happen.  Some patients hit themselves by banging their fists against their eyes or ears. Cauliflower ears are a common outcome of this behavior.  I was told of one particular patient where chronic head banging lead to a deformation of the frontal bone causing a protrusion or, in medical terms, frontal bossing.

Farr.Johnny

Figure: Cauliflower ear in a boxer. Trauma may cause a blood clot under the skin of the ear.  The clot disrupts the connection of the skin to the ear cartilage and in so doing severs its blood supply. The cartilage, deprived of its blood supply, shrivels up to form the classic cauliflower ear.

Frontal_bossing-in_a_child

Figure: Frontal bossing (pronounced forehead) in a child.

Head banging may be seen occasionally in normally developing infants where it usually occurs at night and disappears by about 3 years of age. In a normally developing infant some people consider this behavior to be part of a sleep disorder or, in the case of a pre-verbal child, a way of venting frustrations and making their displeasure known to their parents. In ASD head banging occurs at either night or day, may extend to an older age, and is accompanied by other signs of developmental delays and/or motor stereotypies, e.g. body rocking.

Although head banging against a wall or wood floor would be expected because of the commonality of these objects it is not unusual for ASD individuals to select the sharp edges of metal objects. This selection does not appear to be with the intent of fracturing a bone but rather that of creating intense pain. In this regard what may have been intended as a bout of head banging against a sharp metal object may end up causing severe eye damage or other unintended consequence.

It is often said that SIBs are usually prompted by demands of the physical and social environment. Some researchers consider it a form of self-stimulation, a way of releasing tensions and calming the individual. These behaviors have also been related to the presence of seizures and in one particular type of SIB, eye gouging or poking, to low levels of calcium. Mary Colemean who described the relation of low calcium levels to eye poking has stated that calcium supplements may cause a substantial diminution of the SIB as well as improvements in communication. Another possible metabolic cause is low levels of serotonin or high levels of dopamine. It is not unusual that people taking drugs that increase dopamine levels, amphetamines and apomorphine, initiate self-injurious behaviors.

Many years ago I had the opportunity to work in a project at the NIMH collecting tissue from dogs that constantly licked and chewed on their paws to the point of bleeding. You could say that this condition could be taken as an animal model of either SIB or of obsessive compulsive behaviors in humans. Many veterinarian believed the paw licking behavior was related to boredom on the part of the dogs, anxiety, allergies or an obsessive compulsive trait. Genetics definitely play an important role in pathological paw licking. Purebred or a cross breed constitute approximately 95% of the paw licking dogs. Mutts with genes of more than two breeds constitute less than 5% of the paw licking dogs. In our study, laboratory testing revealed that the dogs had low serotonin levels and treatment with an antidepressant (in order to elevate the serotonin levels) reduced the symptoms.

Some people believe that intense pain is associated with an endorphine rush which may provide a euphoria-like feeling to the individual. Conditions associated to abnormalities in pain sensitivity usually exhibit SIBs. Clinical trials in autism and also in congenital analgesia using an opiate blocker (e,g., naltrexone, naloxone) aiming to reduce the euphoria feeling have diminished the frequency of self-injurious behaviors.

In many cases a precipitating cause may not be obvious. In a future blog I will detail another possible explanation to SIBs in autistic individuals and  how the same may lead to possible means for intervention.

Addendum 9/9/2013: The following note was written to me by my friend Ira Cohen, Chair of Psychology at NYS IRBDD:

Hi Manny

I liked your note on SIB – don’t forget to mention undiagnosed mood disorders as playing a role.

My colleague John Tsiouris, had a case of a young girl from a very large family who had severe autism and self-scratching to the point of bleeding. Upon questioning, she was found to have an older sister with bipolar. Looking at her other behaviors which included curling herself into a ball and unexplained crying, she was placed on an SSRI and almost immediately improved.

Just some food for thought

Best

Ira

20 responses to “Self-Injurious behaviors and autism

  1. These pictures are very painful to view.They are every ASD mother’s worst nightmare.

    I do not think “The Science Fiction of Autism,” which I have read, addresses the subject of SIBs well. The author does a very nice job on other ASD issues, but not this one. So often SIB behavior is a manifestation of pain! am part of group of dozens of moms with similar ASD children. Almost all of our children have severe gastrointestinal disease. Unfortunately it remains very difficult to find a doctor who will agree to scope an ASD child, due to the mistaken belief that ASD is solely a social/ behavioral disorder. Well anyone who views my the photos of my son’s severe ulcerated lower intestine, can clealry see that his problems are not social. The pain he was in was horrific. My son suffered from chronic diarrhea alternating with constipation yet even pediatric GIs dismissed the problem as, “just autism,” or wanted to prescribe Risperdal.

    When when I finally found a GI who understood this problem the doctor prescribed an anti-inflammation treatment via medication and dietary changes. A course of Pentasa and a wheat and dairy free made all the difference son’s life. The SIBs are 90% gone and he is able to enjoy his life! There is not one answer for every child but my point is with SIBs you must look at autism as a whole body disorder. I have also known children whose SIBs was found to be triggered by painful dental problems!

    GI, autoimmune (Strep infections) and dental problems are often at the core of SIB.

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  2. Thank you for the post. I am unsure why a physician would not pursue the necessary work-up on a patient that was dictated by presenting symptoms. I agree that many behavioral problems in ASD are caused by pain as related to infections, dental problem, etc. Some of these problems may be more obvious that others but they all deserve to be pursued and treated.

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  3. I used to have real problems with head banging.With me it was a little different than the usual stories you hear about pain and self abuse.In my case it involved what you might call “grey outs”,almost but not complete black outs,like I used to have with my wandering or eloping.In the case of my head banging,I was partially aware I was doing it,but had no control over what I was doing.It was one one of the first things that went away after I started on the leucovorin.My doctor and I just sort of figured out the head banging was caused by seizures,and the leucovorin controlled my seizures,since there were articles out there about folinic acid responsive seizures.That was 2009.Since then,we have seen more and more coming out in the literature,as well as books like Caren Haines “Silently Seizing”,Explaining the link,in some cases,between self abuse and seizures in some cases of autism.I can tell you it’s very real in some cases,and certainly has not been investigated enough as a cause.

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    • Thank very much for the comment Roger. There were some reports of SIBs associate to seizures in the late 1980’s and early 1990’s. For SIBs that seem to happen for the first time near puberty, this may be a good possibility to consider.

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  4. SIB is complex. There are multiple antecedents that can change daily, weekly or monthly. You need a grab bag of tricks to help combat SIBs. And be able to act both pro-actively (i.e…meet the person’s needs, don’t leave them suffering in silence until they become so frustrated they engage in the SIB to tell you they are hurting or bored or need a drink or are hungry). You also need to be able to act ACUTELY, by immediately protecting the person by either placing a helmet on them or re-directing them. Sometimes acute intervention is simply getting them up, getting them engaged in another activity besides sitting in one position and hitting themselves. Most importantly is love patience and kindness. The autistic person who is self abusive can’t help what they are doing. They need support. They need help.

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  5. Most self abusive autistic individuals have not had the proper support they need, hence they continue to self abuse. A lot of autistics with self abuse also have medical issues that cause pain that cause the self abuse and unless properly treated can evolve into a full blown behavioral disorder. Doctors, do your job! Rule out things that could cause pain and discomfort. Psychiatrists, do an fMRI to see what is going on in the autistic brain so you can properly prescribe the right drugs to target what is in dysfunction, not just throw any old medication on the autistic person hoping it helps. That is medical negligence and laziness at its worst. Can U imagine an orthopedic doctor guessing what operation is needed on a bone? Well then why does a psychiatrist just “guess” what medication is needed for the autistic brain when you haven’t even done any tests to see what area of the autistic brain needs help ???

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  6. Self-injurious behavior, or self abuse in autism is a very complex situation. Most doctors don’t understand there is a baseline of self abuse. That means the normal self abuse that you see that is NOT related to medical issues exacerbating the self abusive behaviors. When that “baseline” self abuse turns into chronic or acute increase of self abuse or self injurious behavior, it’s 99.9% related to an underlying illness, infection, or otherwise undiagnosed and untreated medical reason. The reason so many autistic people aren’t getting the medical care they needs is because so many hospitals and Emergency Rooms do not do the proper medical testing that is required in a case of autism with increased behavioral issues causing self harm. They typically treat the autistic person as a psych patient and say it’s “behavioral” or it’s because they aren’t in their “environment” although all these excuses are idiotic, since they were in their environment before they got to the ER and were presenting with the problem behavior in their environment. Bottom line: most ER’s and hospitals want to discharge the autistic patient as fast as possible. They will drug the patient with heavy hitting pain or anti psychotic meds to avoid doing diagnostic tests. They will claim the autistic patient isn’t stable enough to undergo an MRI or CT scan, even though any reasonable person with intellect would argue, WTF are you talking about, you are the hospital, this is the place where someone can go to get these tests, so if you have put the autistic patient under general anesthesia to get the tests done, do it. Quit making excuses and neglecting autistic patients. An extreme increase in aberrant behavior in autism is always related to medical issues. It’s time for the medical community to wake up.

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  7. According to multiple reports, via SI.com, Heat forward Michael Beasley, in his first game back with Miami after signing as a free agent this summer, had an incident in his first game. Despite scoring nine points and adding two rebounds, Beasley reportedly required “medical treatment” after punching himself in the head out of frustration. But if you are autistic and and punch yourself out of frustration or because of an underlying medical issue, and you seek help in American hospitals, you get no medical treatment…what a joke.

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  8. Has you seen “Rain Man” have you studied the part where the character, portrayed by Dustin Hoffman, a character with High Functioning autism, suddenly presents with self-injurious behavior in the form of slapping himself in the head? The autistic character in this movies suddenly presents with head slapping when he is forced with the idea he must board a plane that he thinks is dangerous. Now, what would make a more NON VERBAL severely-autistic person sometimes present with self-injurious behavior? Could it be when they are perceiving something that they feel is a threat to their need for fixed routines? Their unspoken need for knowing what is happening? Their need for knowing they need more supports? Or more therapy? Or an increased level of care and supports? The answer is yes. Even the most severely autistic people among us, by no fault of their own, would have behavioral meltdown if forced to do something they know is not supporting their needs right? So that said, if we’ve already seen that a higher functioning autistic person will present with SIB, is it not reasonable to think that a lower functioning autistic person, placed in situations where they aren’t given proper levels of support, or are placed in situations where people assigned to their care don’t have a clue about what they feel or need would therefore exhibit more SIBs in this situation? People with autism no matter what their level of functioning are prone to self abuse, so it’s up to us who are able to adequately speak for them, to advocate for the supports and services they need to be safe and healthy and live a more productive life. IF that means, in certain cases, that the level of support would be round the clock care or round the clock nursing care, based on their individual needs than why aren’t the autism experts and all the agencies in charge of delivering services for autistic adults, advocating for them to receive the supports they need instead of forcing parents to go before administrative law judges to get the services they so obviously need?

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  9. Thank you for the comments. Your points are well taken. I am in the midst of writing a chapter about self-injury for a book sponsored by the Autism Research Institute (ARI). I guess I will be posting on what I have learned in a future blog.

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  10. A nurse I met who works in an emergency room confessed to me that when they had a severely autistic patient come in that wouldn’t stop biting themselves, they overmedicated the patient with Halodol, Ativan and Benadryl because “they were short staffed” and it “was too hard to get the patient into an MRI” to see if pain was causing their increased self abuse.

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    • Such an abuse should have been reported to the medical association. It is unethical to say the least and goes against the core principle of medicine, “first do no harm”.

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  11. There are specific genetic biomarkers that should be identified in every autistic patient suffering from chronic SIB. Sadly, that requires genetic testing that is still in the infancy stages of identifying which specific medications are involved in a gene and specific medication solution. Too often, doctors guess which medication will aid in the treatment of SIB. ANK3 dysregulation…and the diligent analysis of which neurotransmitter dysfunctions are involved in order to effectively mitigate the desire to self abuse, is at the root of many of these cases.

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  12. I have had problems with self injurious behavior which eventually was resolved when secondary hyperparathyroidism due to calcium deficiency was discovered. I am a nutritionist with ADHD and symptoms of autism that were not considered ‘clinically significant’ enough for a diagnosis by a psychiatric professional. However since then I had genetic screening performed for 30 defects in the methylation cycle which have been known to be more common in people with autism and I was found to have 11 of the 30. Maintaining better parathyroid hormone levels is a daily task. I take calcium supplements because dairy products cause congestion and have more vitamin D than is good for my genetic defects. I have a defect in my vitD receptors which make them overactive. My intestines don’t seem to absorb magnesium well possibly due to the overactive vitamin D receptors which would favor calcium absorption. If I take too much calcium it causes significant irritability which can then be resolved by taking an Epsom salt bath which allows magnesium to be absorbed through the skin. Secondary hyperparathyroidism caused significant mental health symptoms and an uncontrollable urge to ‘pop’ myself with anything sharp, including my teeth – I have a problem with fingernail chewing that turned into a more intense fingertip chewing that was hard to control. An urge to gouge my eyes out was also bizarre and scary and hard to control. Taking calcium supplement daily is important. The symptoms can return within just two or three days of forgetting my supplements.

    Autism is very much a body disease that causes mental health symptoms which can be managed somewhat with improved diet and lifestyle habits (getting low blood sugar can make me worse). Autism is not just a mental health condition that can be helped by talk therapy or behavior retraining strategies. Recent research and my personal experiences suggest to me that autism is more likely to be a birth defect that can become worse in early childhood if too many toxins and not enough nutrients are provided to the genetically susceptible child.

    I have shared more about my health struggles and recent research links on my websites transcendingsquare.com and lpaad.org . Thank you very much for sharing this article and thanks to all of the people who shared their comments. I hope you are all doing well.

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  13. My son had banged his head all his life- he has blinded himself in one eye due to punching his eye. He rubbed skin off his palms in the past. He has been on a gluten and dairy free diet since he was three. He was diagnosed at two years old. He is now 19. His forehead now protrudes very significantly. I watched a film recently call ‘Concussion’ and could not help wondering if there was any link between the head banging and subsequent and increasingly violent behaviours in my son. The prevailing wisdom seems to be to medicate him with risperidone and larazepam. He now lives in an autism specific residence. They don’t say much about it but I get the impression that the residents who are all on the severe end of the spectrum, die younger. Is the prognosis for young people like my son an earlier death than the norm? I wish someone would be honest with me!!! Thank you!!

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    • Self injurious behaviors tends to be chronic and have many negative consequences that affect the quality and length of life. I remember reading the unfortunate case of a young man that despite his parents best intentions dies of a brain hemorrhage after head banging. It is a very difficult problem. Steve Edelson just edited a book on self-injurious behaviors. I think Jessica Kingsley is the publisher. It may provide some useful information.

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  14. Both my non-verbal autistic children headband many of the reason I can tell for reasons that have already been identified. My son must hit his right eye often just because so I wrap them with padding in hope to leaden the damage to his eye and brain but I have many Adult protective service reports. Even though doctors, nurses, Therapist, care givers and case worker all see the importance of this they protect the law of “no restaurants ” can be used. If he was in a hospital or institution the restraints they would use is Haldol and he would have no pleasent interaction. The schoolast insisted he have a feeding tube because he would spit when they fed him or vomited after wards instead of thinking the room was to stimulating for him. I agreed just to stop the state and police from coming by. When they agreed to home school many things changed. I need a way to please the state so he can wear a helmet when needed and his hand wrapped with towels held by ace bandages. Funny how years ago APS suggested boxing gloves which worked for a long while. Please let me know how I can get “protective gear” such as a helmet not to be concerned restaurants. They would rather have someone die then to be the one to say that restraints such as these is in the best interest of the client. They put him in danger but I have no recorse to CALL APS on them. They are always saying because of the hand wraps they are”concerned for his safty”. Iam at a lost as to what to do. Help someone if u can.

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    • I do not have ready answers. If you wanted, maybe you can consider writing a blog and I will post it. Hopefully some of the readers can tell you what has worked for them.

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