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autism and self harm

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Having just attended the NAS Professionals conference I was lucky enough to attend a presentation by Lucy Sanctuary, a Paediatric Speech and Language Therapist. Lucy's presentation was entitled 'Improving support at home for families of young people who are harming themselves and others'. It was a really fascinating exploration of both the professional approach to self harm and autism and also the personal experiences of Lucy as a parent. One of the points made by Lucy was the need for early support and intervention and importantly from a joined up team all working with the same approach, and with consistency. Clear communication and reducing anxiety being key starting points. 

I'd be keen to hear others experience of autism and self harm; what has been effective, what have been the main learning points, what advice you have for others?   

March 10, 2017 - 1:28am

Like most challenging behaviors Self Harm in autism can occur for a variety of reasons;

A small percentage of people with autism and developmental disabilities engage in frequent self injurious behavior. My first 12 years in the field were spent in an institutional setting providing services to severely impaired individuals with multiple behavior challenges. During this time I had the opportunity to work with some very fragile individuals with severe physical and emotional vulnerabilities. Self injury took a variety of forms including biting, digging, hitting, slapping, kicking, gouging, head banging, and ingesting inedible items. During that time I learned that self injurious behavior occurs for several reasons:

1. Self abusive behavior is more common with individuals who are nonverbal and have no consistent way of expressing themselves. Consequently, self injurious behavior often is communicating pain, discomfort, frustration, task demands, need for attention, etc. Self abuse can be used to communicate any intense emotional reactions. Once the child begins to develop language (or other form of communication) self abuse tends to decrease to only those times when coping skills break down.

2. Self abuse occurs most frequently in those children that have very poor impulse control and poor emotional regulation. Consequently you will see more self abuse in young children or severely impaired individuals with poor executive functioning skills. However, many adults report the occurrence of self abuse with extremely overwhelmed. The emotional centers of the brain overpower the thinking centers of the brain. They react with intense emotion without the ability to inhibit the impulse.

3. Most self abusive behavior involves strong proprioception (tension to joints, tendons, and muscles), which reduces stress chemicals (cortisol) in the nervous system. Hitting, kicking, biting, and head banging provides strong proprioception that reduces stress chemicals during times of emotional outbursts. When the stress chemicals accumulate to boiling point, the “fight or flight” stress response is activated, seeking strong proprioception to reduce the stress chemicals.

4. Abusing yourself produces strong reactions from others and these reactions can increase the frequency of self abuse. The person learns that self injury gains a lot of attention, and also allows them to escape situations that they want to avoid. People around them will do anything to stop the self abuse. The individuals learn that the behavior can create a lot of control over their social environment (people let them escape unwanted situations, give them what they want, let them have their way in order to pacify them).

5. Self abusive behavior can be used to mask, or dull pain. Individuals may bang their head to mask pain from headaches and ear infections. They may hit themselves in the jaw to distract from toothaches. When self abuse begins, or increases significantly, medical evaluation is important.

6. Self abusive behavior can be for self stimulation; to help regulate the nervous system. It can alert the nervous system when under-aroused and release stress chemicals when over-aroused. This behavior frequently occurs during times of no activity or when overwhelmed by too much activity.

In my experience frequent self abusive behavior occurs most frequently in individuals with poor communication skills, with weak impulse control, poor emotional regulation, and inadequate coping skills. When it starts all of a sudden, suspect some medical/physical problem. Internal discomfort and agitation can elicit self abusive behavior.

Severe and persistent self injury (from biting, hitting, scratching, digging, etc.) can start for any of the above reasons, but can become addicting over time. The pain from self injury stimulates the body to release endorphins which is the body’s natural pain killer. Endorphins act like opiates which feel good, and the person can get addicted to the “feel good” endorphins. Not only do endorphins help dull the sense of pain, but they also feel good. The individual self injures to stimulate the release of endorphins to maintain the “feeling.” Since the endorphins act to dull the pain the behavior is not felt as painful.
Self abuse that occurs for this reason can get worse over time. Like all addiction, the body begins to “habituate” (gain a tolerance for) to the stimulation, requiring the individual to do it more intensively to stimulate the pain to release the endorphins. The brain has a defense mechanism to dull the sense of pain over time, making it necessary to increase the intensity to stimulate the endorphins. In addition, scarring that can occur from the injury dulls the pain, requiring the individual to dig or bite deeper to stimulate pain. These individuals will gradually go from minor injuries to creating severe injury as the skin becomes more and more scarred. The individual then has to gouge or tear out tissue to get deeper for pain. In such case the medication naltrexone can be used to block the body’s release of endorphins. If this works, the self abuse begins to hurt more, and doesn’t release the “feel good” chemicals that are addicting.

In many cases chronic, persistent self injurious behavior ends up being maintained by several of the above functions. It can start because of only one reason, but once started can gain many secondary values by the addition of several of the other functions. In most cases, professional help is needed to isolate the functions, and develop effective strategies to treat each function.

Treating Self Injurious Behavior

1. Treating self injurious behavior usually starts with doing a “functional behavior assessment” to identify the “functions” that the behavior serves (communication, stress release, escaping unwanted events, self stimulation, etc.) Functional behavior assessments involve tracking and identifying the situations under which the behavior occurs (when, where, with whom) and observing the immediate effects that the behavior produces. By identifying what triggers the behavior, and what occurs immediately after the behavior, we begin to get an idea of which function it provides.

2. Treatment then usually proceeds with changing the conditions (lowering demands, reducing stimulation, increasing support, etc.) that trigger the behavior, and teaching another, more appropriate, “replacement” behavior that meets the same need (function). For example, if the child self injuries when difficult demands are placed on him, then we can initially lower the demands while teaching a more appropriate way of escaping (say no, stop card, etc.) and/or asking for help.

3. First we look at what environment demands are overwhelming or lacking for the person. This may require modifying the environmental demands, building in accommodations to lessen their impact, or providing greater assistance to support the person when faced with these conditions. If the person has too many demands placed on him, we look at providing fewer demands, making the demands easier, or providing added support in face of the demands. We want to better match the demands of the situation to the skill level of the person.

4. If the function of self abuse is to communicate needs and wants, then we focus on teaching the child communication skills. If person is nonverbal then we teach an alternative means of communication, such as pictures, gestures, signing, etc. We identify what the person is trying to communicate and then try to teach another, more appropriate way of communicating.

5. If the behavior is occurring to escape or avoid unwanted situations, we often need to look at “why” the person is trying to escape or avoid the situation in the first place. From there we build in added supports, or lessen the demands. In addition, we need to teach another way to communicate “stop” or “help”. Teach him another behavior to appropriately escape the situation. Practice and role play the new response until it is well learned. Once the new response is learned, then during demands situations encourage the child to use the replacement behavior and immediately allow him to escape. It is important that the new, more appropriate way of “escaping” is immediately reinforced with successful avoidance.

6. If the self abuse occurs for proprioception to release stress chemicals, than we look at (a) developing a sensory diet that gives frequent physical activity and other forms of proprioception (chewing gum, squish balls, weighted vest, etc.) to release stress chemicals throughout the day, and (2) teach an alternative replacement behavior to substitute for the self abuse. For example, if the child bites his wrist, then we might provide a chewy tube to bite on. This would provide an appropriate form of biting/chewing. Substituting one form of proprioception for another.

7. If the person is engaging in self abuse to mask pain, than we identify the source of pain and treat it. We also try and teach the person a method of communicating to others that they feel pain.

8. If the person is self abusing to get strong reactions from others, we (a) lower the intensity of our reactions, and (2) provide stronger attention for other more appropriate behavior.

9. If the person is engaging in self abuse for self stimulation then we try and increase the stimulation the person Is receiving (keep them busier, provide an environment rich in stimulation) and teach other forms of self stimulation that either calms or alerts the nervous system. We also build in a sensory diet to provide the person frequent stimulation.

10. If the behavior is the result of high anxiety, and the above doesn’t help, then medications are often used to calm the nervous system.

11. In rare occasions when the self injurious behavior may be maintained by endorphins (as discussed above) then we give naltrexone to block the release of endorphins.