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Living with Autism

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March 14, 2014

Behavioral Problems in Autism Linked to Medical Issues

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryOne of the most challenging autism cases a behavioral or mental health therapist can encounter is a case involving severe self-injurious behavior (SIB) in autism. Because there are different levels and types of SIB, I will write only about head banging in this post. (My autistic son doesn't head bang, but the questions I've devised at end are the same questions I would ask for autistic people who punch or slap themselves in the head area). 

Head banging is different than body, face or head hitting. But it is just as heartbreaking. It demands kind, compassionate and effective analysis, treatment and intervention. 

Head banging in autistic individuals often involves, but is not limited to, slamming the whole head, or parts of the head, into walls, windows, car doors, cement sidewalks, tile floors, carpeted floors, trees, fences, chairs, refrigerators, tables, elevators, dirt trails, sides of swimming pools, shopping carts, swing sets and/or bedposts. Headbanging in autism can begin from one year old. It's a very serious behavior. Left untreated, the autistic person will suffer years of injury, pain and suffering. I've heard some painful stories. 

Years ago, at an autism support group meeting, I met a 59 year old woman whose severely-autistic daughter was a "head banger". The severely-autistic adult "child" (still learning to use the bathroom) was living with her aging mother and father because she had been "evicted" from every group home from San Bernadino to San Diego County. During her latest return back home, the autistic woman suddenly crashed her head through the family car's front window. Apparently, a car in the next lane had backfired and burned out, triggering the behavioral outburst. Can you imagine the stress on this mother?

Over time, the mother dreamed of killing herself and dropping her daughter off at a convent. She prayed for a miracle. 

At some point, a court appointed counselor/therapist arrived. The mother could not bare another disappointed. "Come in," was all she could whisper. 

The therapist, an unmarried, Welsh-born, childless woman in her early twenties. Surely, she lacked experience. What would she know? recalled the woman. Well, it turned out she knew plenty. The therapist had grown up on a farm, with a big family and with a severely-autistic sibling who had severe self-injurious behaviors. The main behavior: headbanging. It wasn't an overnight success, and there were others who aided in the behavioral changes, but the point is, the autistic woman's behavior improved. (She was not cured of autism. She still apparently had some mild self-abusive behaviors, but the headbanging stopped). 

What was eventually discovered to be the underlying, fueling etiology to this horrendous headbanging?

Apparently, a previous unknown Ethmoid bone (nasal) fracture had left fragments embedded into the autistic woman's cribriform plate (part of FRONTAL BONE and roof of nasal cavity) leading to all sorts of problems nobody tied to the onset of her headbanging. 

One can only imagine the chronic pain this autistic woman had been suffering to the point she began to smash her forehead into things. Her old injury was treated, however the post-op recovery was apparently a two week understandable nightmare, that became so bad, the autistic woman had to be put in restraints and medicated, to prevent her from clawing at her nose. 

Clearly, some behavioral problems in autism are linked to hidden medical issues, as this is only one of many stories I've heard and read, illuminating medical issues contributing to behavioral problems in autism. No doubt, it takes a team effort. For sure, doctors who treat self-injurious autistic patients should rule out anything medical that could be the cause of acute or chronic health dangerous behaviors. And behavioral therapists can ask more questions that need to be asked when a NON-VERBAL autistic person exhibits acute or chronic serious self-injurious behavior. Some helpful questions are:



At what age did the headbanging first present itself? ______

Have doctors ordered functional or structural imaging (fMRI, MRI, CT scan) of head to rule out underlying medical issues that may be fueling the headbanging? If yes, list which ones and results, if known____________________

WHAT part of the head is targeted? 
1. Right             Yes___    No____
2. Left               Yes___    No____
3. Front              Yes___   No_____
4. Back               Yes____  No_____


WHEN is the headbanging happening?

For example:  (answer Yes or No)

Upon awakening?                      
During, before or after eating?   
During, before or after drinking? 
During, before or after bath or shower?           
Before or after bedtime?                              
While walking?                          
While running?                           
While sitting?
While playing?                           
In vehicles?
While vehicle is stopped?
While vehicle is moving?
Before, during or after 
After or while hearing loud noises?
At specific times of day?
At random times throughout day?

HOW do you stop the headbanging? Be specific. 

What works to stop the headbanging? Please explain. 



Does the person engage in headbanging when nobody is around? 

Does the person engage in headbanging only in the presence of others?

Remember, parents of these severely-autistic children and adults are counting on you to help. Ask the critical questions that will illuminate everything and anything that could be contributing to the self-injurious behavior. 

Kim Oakley






                     

6 comments:

Unknown said...

Age is a head banger. She has known to even wake up in the middle of the night and slam her head into the nearest wall a couple times randomly. We heard her doing it for no reason during the day too out of nowhere in her room. She mostly does it when she's angry though or if something else is bothering her. Always the front of her head. I did a test I saw offline to see if she suffers from frontal lobe damage and she failed every test I did which means she probably does have damage. I always wonder why she mainly bangs her front. I mean she is also a head puncher and has hit other sides of her head but mostly punches and slams her front of her head. No idea why.

Kim Oakley said...

Autistics who suffer from SIB and often target the frontal lobe area of the skull are trying to tell us something. It could be many things, but the first thing I would ask doctor is to order a CT scan of the sinuses and rule out underlying etiologies fueling SIB stemming from undetected problems in the frontal sinus and ethmoidal air cells. I would also ask doctor to consider supraorbital nerve compression/dysregulation being involved. This could cause intermittent head pain, further exacerbated by trauma to head caused by the reaction to the pain, which of course is SIB to the frontal part of skull. Age can't tell you what is wrong but if she's constantly targeting this area, I can't imagine why it wouldn't make sense to have a doctor look deeper into this area to investigate if ANY underlying pathology is contributing to this dangerous self-injurious behavior. Poor Age has suffered a long time from this. I don't understand why simply being "autistic" is an excuse for so many professionals to stop investigating every single potential etiology to this devastating behavior. Often SIB never began as a simple behavior. The SIB begins in many autistic people after they were left undiagnosed with some chronic medical issue that drove them nuts to the point of wanting to constantly head bang, head hit or otherwise injure themselves. From that point, the medical issues fueling SIB that go untreated, push the SIB into becoming a chronic full blown disorder. The non verbal autistic person actually learned SIB because it was there ONLY way of crying out for help. Even if the medical issue is resolved, years later, the SIB may remain, and must be then treated as a behavior. But too often the underlying medical issues involved in SIB are ignored, downplayed and left tormenting the autistic person. Go back to the doctor and ask for more testing. Head banging in autism is not just simply part of autism. They are using SIB to communicate great distress. It's difficult for doctors because you may have to go to several to get an answer. The neurologist can help with nerve issues. The Ear/nose/throat doctor with sinus issues and the psychiatrist with any underlying neuron dysregulation. Meanwhile, the Family Doc can explore basic things like acute infections or offer pain meds until someone has enough sense to get this poor girl the medical imaging and testing she needs to see what the heck is going on. Chronic health damaging SIB should never be brushed off as part of autism to be accepted. This isn't a pallative care situation, it's a medical emergency everytime she smashes her head into the wall. I am so tired of people taking serious SIB in autism so lightly. You must be their voice. You must be their tireless advocate. Remember the case of the autistic man who had been punching himself in the temporal lobe area, for years. Finally, one doctor discovered he had a chronic, painful mastoid infection. I'm not saying all cases of SIB will be caused by something that can be discovered, but I'm willing to bet that many intraccable SIB cases, after aggressive and complete medical investigation, do in fact have an underlying, fueling etiology that can be treated and bring great relief to so many non-verbal autistic people suffering from SIB. Don't give up. You are a great advocate for Age. Keep fighting for her right to effective treatment for this devastating behavior. Since her SIB is chronic and intermittent, this should be a critical clue for doctors. Also, the fact she hits herself in other areas of her body could mean she's merely reacting to the pain that is stemming from the frontal bone area. Please keep us posted.

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MattW said...
This comment has been removed by a blog administrator.
MattW said...

Frank Symons at the University of Minnesota has also done some extensive work regarding self injurious behavior and integrating medical and behavioral assessments. His work can be a fine example of testing the whole person.

John M said...

I really enjoy reading this blog, it has really great and insightful information.

I used to be a hand banger myself. I guess technically I still am but not nearly as bad as in the past. Its believed to be controllable but mine were not always…I sometimes would be in a sort of haze, so I didn’t even know I was doing it. What I mean is, its not always a behavioral outburst from “going nuts”. It also may not be from a preexisting (unrelated to main diagnosis) medical condition. Mine were triggered by all sorts of things like my various SPDs, ADHD, various Autism behavioral challenges and epilepsy. Fore instance I have daily episodic uncontrollable torso rocking that’s extremely dangerous and aggressive that is diagnosed as severe SIB. My aids tell me sometimes I would be sitting quietly at home and all of a sudden start head banging. I frequently banded my head in the car, against walls, floors, chairs, etc. Thankfully I wore a helmet but it wasn’t a very good one despite being one of the better ones on the market. With my SPD, I am very sensitive to lots of things including sounds like music, tv/movies, lots of people talking at once, etc. I am also very sensitive to lots of scents or smells. Through endless evals, I have learned all of these are triggers to my head banging. Today, I wear a full time custom cast thermoplastic helmet with my entire face behind a full face shield, so I have protection from these triggers. I also have hearing protection built into the multi-density foam layers in my helmet. I am never without my helmet, I even sleep in it to. I also have other special equipment which over the years has been refined to help me more and more to the point where I am mostly under control today. I can sit with tutors for example and learn how to read and write better and because of it all I live more of a normal productive life. Its really all about providing the right tools, but behavioral therapy is not the only answer. For me, most of my life I was treated as though I head banged as a form of communicating frustration or as a behavior outburst out of bad behavior, so a lot of pressure was put on me in countless therapy sessions over and over which at that time I did not have the capacity to even understand or grasp. Not all OT’s are created equally either and just because a certain type of therapy works for the majority, does not mean it works for all. I now wear a full time harness and use a combo of special equipment and three different weekly therapies and I’m doing the best I ever have. I guess in the end I do agree with the author because what she is saying is SIB is not always fueled by the obvious or mainstream reasons, sometimes its things that are not physically or mentally easily determined. I was lucky to have a team that looked very hard at what was going on and found working solutions.

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