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A Note on Downloads

The content in this entire Coping With Autism page can be downloaded as part of a single document below.

Also, downloadable from this page is 'Matt's Daily Health Guide', my attempt to summarize general health related behaviors that I think everyone should consider. There are many recommendations therein that can be used to guide your care of your child, and yourself.

Managing Sensory Integration

Sensory integration is the largely unconscious skill of correctly integrating the enormous quantities of sensory information that your sense organs are detecting in a way that only important and relevant information is presented to your conscious mind. Children with autism have severe problems with this skill due to the fact that their overly excitatory nervous systems let too much sensory information penetrate into their brains, overwhelming the structures that discriminate between different types of information.

There are ways to help children with autism, as well as adults, learn to cope more effectively with their problems with sensory integration. This is often described as putting your child on a sensory diet. Nearly all senses can be addressed in a way that improves quality of life for people with autism. And, research and the personal experiences of many parents of autistic children have demonstrated the enormous benefits of managing the sensory exposures of autistic children.

Children with ADHD can also be benefit through a sensory diet. Preliminary findings from a study of children with ADHD show that sensory intervention -- for example, deep pressure and strenuous exercise -- can significantly improve problem behaviors such as restlessness, impulsivity and hyperactivity. In one study, of the children receiving occupational therapy, ninety five percent improved.

A note of caution: All children with autism will respond differently to attempts to help them with their sensory problems. Some children will love showers and will stay in them for hours if allowed. Some will scream bloody murder if you try to make them take one. Some will love the sound of the ocean. Others will recoil. You will have to learn how to judge how your child is impacted by a particular sensory stimuli. Attempts to use progressive desensitization may need to be cut short if the child is becoming excessively stressed out. It will be a slow and challenging process. But, it is necessary.

Avoid Problematic Sensory Exposures

You need to understand what sensory channels are hyperstimulated or hypostimulated in your child and manage the inputs. Noise and touch are usually the two biggest challenges for an autistic child. Parents need to get outside of their own heads in figuring out the stimuli that trouble their child. You need to become a detective, understanding that stimuli that you can’t even perceive may be driving your child crazy. Keep a log of what is happening in the sensory environment each time your child melts down or withdraws. Patterns will emerge. When you have identified a sound that your child can’t take, figure out if you can eliminate it. If your child can’t handle a vacuum cleaner, then replace your carpet with hard wood floors. Or, only vacuum when your child is outside and well out of earshot. If you child has itchy skin, use moisturizer. Shop for groceries at a smaller market instead of Walmart, which presents a highly toxic sensory environment that causes many children to melt down quickly. Or, leave your child with a neighbor when you need to shop. Also, control the pitch and tone of your voice. Autistic kids are highly sensitive to emotional content in voices. Try not to let your frustration seep into your communication. Learn relaxation techniques to deal with your stress. Don’t add any more stress load onto your child than you need to. 

     Noise and Vibration

Noise and vibration, for the most part, is a recent manmade scourge. It distorts the external world, hinders the proper perception of sound, and knocks the body’s rhythms out of tune, furthering dysfunction for the sensory defensive. Human hearing evolved in an environment of relative quiet, ill preparing us to endure the frequently unpredictable, uncontrollable, unwanted, and even harmful screaming, humming, buzzing, clanking, beeping sounds of modern life. Noise can make people angry, even explosive.

One of the most frequent triggers of autistic melt downs is noise and vibration, whether from car engines, dishwashers, air handlers, telephones, beeping delivery trucks, squeaky brakes, bathroom vent fans or hair dryers. Many problematic behaviors are ultimately triggered due to anticipation of being subjected to a painful noise. Temple Grandin (probably the world’s most famous autistic persons) says that her hearing is like having a sound amplifier set on maximum loudness. She discovered that she could more easily handle painful sounds by engaging in rhythmic stereotypical autistic behavior.

When managing your child’s auditory environment, pay special attention to background noise and sudden noises. Notice how competing noise, white noise, and loud noises affect your child’s ability to pay attention. Remember that sometimes the senses mix. For example, for some autistic people a loud noise may affect their ability to see things clearly or to remain standing. A way to reduce auditory reverberation is to use carpet, cork flooring, ceiling tiles, and/or large padded furniture. It is vitally important to have quiet spaces to get away from the stimulation of daily activity.

     Bad Light

Lighting is a problem for autistics. Fluorescent lights send out pulsing vibrations that, though often not easily noticeable to normal people, are detectable and highly uncomfortable for many autistics. One researcher found that fluorescent lights increased repetitive behavior in some autistic children. Many parents of autistic children are very aware of the problems of fluorescent lights – a trip to a modern big box shopping outlet can be a very short lived excursion as autistic children often quickly melt down under the glare of the fluorescent lights and the din of the reverberating warehouse.

The lighting provided by our modern living environment is troubling for us all. The typical sixteen hours of indoor light many of us get on a daily basis provides dramatically less light than that received from a single hour outdoors. Light deprived, we literally live in the twilight zone. With our modern indoor lifestyle and our habit of covering up when outdoors, we synthesize only a tiny proportion of the vitamin D that a naked hunter on the African savannah would absorb, and this may be vastly inadequate for our metabolic needs.

Lighting in schools is particularly problematic. One of the major problems with standard fluorescent lighting is that it is incomplete, only offering illumination in a few of the possible visible spectra. To the human nervous system, spending time in a regular fluorescently illuminated room is equivalent to sitting in pitch dark, because the nervous system structure in charge of modulating the human circadian cycle does not pick up the light emitted by fluorescent light. Natural light is always preferable as a source of illumination.

However, not all fluorescent lights are created equal. In 1973, Ott, a pioneer in light research, conducted a study comparing the performance of first grade children in four windowless classrooms, under full spectrum fluorescent light fixtures (which are adjusted to emit light in all visible wavelengths) or the standard cool white fluorescent. Under the cool white fluorescent lighting, some students demonstrated hyperactivity, fatigue, irritability, and attention deficits. Under exposure to full spectrum lighting for one month, their behavior, classroom performance, and overall academic achievement improved markedly. Several learning disabled children with extreme hyperactivity calmed down and seemed to overcome some of their learning and reading problems. Ott subsequently designed his own lighting system, called Ott lights, which offer light in substantial and beneficial amounts and spectra.

     Problematic Visual Exposures

There are many problematic visual exposures for autistic children, most of which involve modern technology. Corporate researchers learned a long time ago that if you want to grab the attention of a child, such that they pay attention to your show or your message, stimulate their brain. Children respond involuntarily to stimulating visual images. The modern childrens’ television shows follow these rules. The reason for the constantly changing picture, no segment lasting more than a few seconds, with tremendous movement and motion, is that this type of viewing experience causes electrical excitation in the brain, and children respond to this not knowing the neural load they are subjecting themselves to. The famous Pokemon episode, in which children worldwide but in particular in Japan developed seizures during watching an episode, illustrates this point. Seizures result from excessive neural excitation, which in this case, was induced by exactly the same mechanisms underlying modern children’s programming, just taken to a level that was too far. So, programmers have backed down the excitatory content to a level just below that which induces seizures. This is not good for anyone, but it is particularly bad for autistic children.

This problematic exposure is not limited to TV shows. It applies to video games, and internet sites, and movies, and many other media. The knowledge of how to grab someone’s attention using stimulation has spread through our society. And, grabbing attention in our technology driven, modern world involves increasing neural excitation, irrespective of the venue. Protect your child as best you can from this. Many autistic children become fascinated by images on television sets and will melt down if you try to remove them from this influence. My advice is get rid of the television. Don’t let this pattern develop in the first place. If it does, bite the bullet and end it even if you trigger a melt down. Exposure to electronic images is a long term problem that likely perpetuates the underlying imbalances of autism.

Also, beyond issues with technology, visual perception can be challenging for many individuals. Suggestions that have helped include:

- Reduce visual clutter while keeping materials visible and accessible.
- Reduce glare and visual refraction by turning off unnecessary lighting, especially fluorescent lighting. Use matte finishes on surfaces and walls.
- Use lamps instead of overhead lights; choose low wattage light bulbs; and use soft colored lights that cut down on contrast and color contrast in a room.
- Choices of colors for walls, floors and furniture are important. Solid colors for the walls sometimes help people with depth perception differences to judge distances. One plain wall in a room can provide a visually quiet space. Floors and walls should not be the same color. Some people report being able to move better when the floor pattern is compelling, such as floor tiles with a black and white pattern.

     Light Touch

To many autistic children, light touch is truly disturbing. Human skin has various sensors at the base of the hairs that are designed to scan for threats, such as a snake slithering across your arm while you sleep. These sensors are activated by light touch, triggering an alarm signal to the brain at the lightest of touches. In autistic children, with their overly excitatory nervous systems, light touch can send an amplified signal of great alarm to the brain resulting from a light caress from their mother, irrespective of what the child’s eyes are telling them about who or what they are interacting with.

The way to address this is firm touch. If you touch your child firmly, the pressure on the skin cancels out the signals that would be sent by the sensors at the base of the hairs. Firm touch means no alarm is triggered, and no additional load is applied to the nervous system of your child. So, when touching your child, pay attention. You may want to caress them softly, but don’t be selfish if they don’t like it. If they flinch, or startle, or seem uncomfortable, they are probably reacting negatively to the light touch. Try touching them firmly instead. This means hug them tight. If you want to touch their arm, wrap your hand around their wrist firmly. If you want to stroke their back, do it with your whole hand, instead of just a finger, and apply real pressure. Experiment. If might cause some discomfort in the moment, but it will bear fruit over life.

Also, and I know this is confusing and frustrating, a child’s ability to bear light touch varies over time. It changes over the course of the day, depending upon many factors, including time of day, their mood, the level of their reservoir, and hormonal fluctuations. This is not a result of the child being willful, or stubborn, or anything. It has to do with the level of electrical excitation in their nervous system and the functioning of their stress response system. The little hairs on your arms and legs are more excitatory when the stress response is in activation mode, since that is when the brain is scanning the world for threats most vigorously. If you are uncertain where they are, use firm touch. For most autistic children, firm touch is almost always fine.

Seek Exposure to Positive Sensations

The most effective therapy techniques for autism appeal to three basic sensory systems, one of which is external and the other two are internal. The tactile system controls the sense of touch and is an external sense. The vestibular system controls sensations of gravity and movement, and the proprioceptive system regulates the awareness of the body in space; both are internal. Therapy is tailored to each child's needs and can involve such techniques as lightly or deeply brushing the skin, moving on swings or working with an exercise ball. The auditory system is also potentially useful in managing autism.

     Tactile

As discussed above, firm touch is often very helpful for an autistic child or adult. Bear hugs are usually very well tolerated and extremely helpful for autistic children. Hug them hard and hug them all the time. Tuck them in at bed time. Think swaddling. You know swaddling was a way of keeping your infant happy. Your autistic child needs swaddling as well, just in different ways. Their nervous system can be as sensitive as an infant’s. They often need similar treatment.

Both human and animal studies indicate that deep pressure is calming and reduces arousal in the nervous system. Researchers have shown that pressure applied to both sides of a person’s body decreased metabolic rate, pulse rate and muscle tone. Gently pinching a rabbit’s skin with padded clips creates a deactivated EEG reading, relaxed muscle tone, and drowsiness. Rubbing and gently pinching a cat’s paw will increase tonic inhibitory neural activity in several brain areas.

Working with an autistic child is similar to working with a nervous horse, according to Temple Grandin, who works on a daily basis with farm animals. Horse trainers have found that nervous horses become easier to handle if they are rubbed and brushed frequently. At first a horse might flinch, but gradually it will start relaxing when stroked. Like the autistic child, touching that was initially aversive becomes pleasurable. A stimulus that was once actively avoided is now actively sought out.

The technique that helped Temple deal with the world as a young adult was a squeeze machine she built for herself. She built a machine that squeezed two pieces of padded plywood together in a firm fashion that she could control. 30 minutes a day in this machine, receiving the firm and controllable touch she needed to normalize her nervous system, dramatically improved her ability to deal with the world.

     Vestibular and Proprioceptive

Stimulating the internal senses is often hugely beneficial for a child with oversensitive external senses. Many autistic children figure this out on their own from simple trial and error. They often love to simply spin around in circles endlessly, providing both vestibular and proprioceptive benefits, or rock while holding themselves tightly, also providing vestibular and proprioceptive input along with firm pressure.

As youngsters, we get lots of vestibular input: we swing, jump on trampolines, rollerblade, dive into water, or enjoy other activities that require a quick shift from being totally vertical. This keeps our vestibular apparatus oiled. The more vestibular input, the better any nervous system functions. If deprived of normal rocking and bouncing, infants may suffer effects as damaging as seen in touch deprivation. In Harry Harlow’s famous experiment with rhesus monkeys, baby monkeys were removed from their mothers and given a terrycloth mother for contact comfort and a wire mother with a bottle for feeding. As adults, the monkeys displayed abnormal behaviors reminiscent of autism such as self-clasping and self-rocking.

The need for vestibular input is particularly true for the externally sensory defensive. The nervous system of the sensory defensive demands activities that offer up and down, side to side, and back and forth movement. To maintain optimal arousal, a young child needs considerable sensory input and may need to be rocked strongly for a half-hour several times a day.

You can use controlled proprioceptive and vestibular stimulation as part of managing your child’s autism. Encourage your child to spend time jumping on a trampoline or swinging on swings outside. Roughhouse with them. Roll around on the ground. Spin with them. Also, get them a rocking chair. Almost all people benefit from the calming influence of rocking quietly. You get movement as well as vestibular and proprioceptive stimulation in a way that you control completely. One researcher found that a mute child will often start making speech sounds while he or she is swinging in a swing, indicating that the abnormal influences restricting a desire to communicate are mitigated during this gentle and constant movement. Swinging stimulates the vestibular system.

Other types of proprioceptive stimulation include cracking knuckles, grinding or clenching our teeth, or chewing away at gum; these are ways of getting pressure into our joints. Heavy resistance against your arms – heavy work – invokes quick calm. By strongly engaging the muscles and joints, you are stimulating the cerebellum at the back part of your brain stem, which communicates with the reticular activating system to inhibit arousal to a normal level so you can concentrate on the task at hand. Once arousal is contained, you can think more clearly. A back rub or rocking back and forth in your chair has a similar effect.

     Auditory

Your child also needs the auditory equivalent of firm touch. Random high pitched noises probably freak them out. A constant clutter of unsynchronized background noise can be hard to take. Music can help with this. It can mask modern background noise. The symmetries and rhythms in the music can also calm the nervous system. Autistic children are very sensitive to symmetries, both auditory and visual. Things that are beautiful can calm them just like any person. You know the feeling of calmness you feel when you see something truly beautiful like a sunset or the ocean. Cultivate that feeling in your child. Teaching your child a musical instrument may do wonders. Not only does the music soothe them, but the sense of control they have in producing the music likely has great benefits.

Flowing water is also a very useful tool. It can help in many different forms. The noise of flowing water can calm the nervous system, whether a fountain, or a stream, or the waves of an ocean. A noise machine with flowing water may help with the reverberations and background noise in your home in a way that you don’t notice but your child does. A shower can be a wonderful comfort for an autistic child, if that child is not overstimulated out by the tactile stimulation of multiple streams of water. The combination of the firm pressure of the water, the noise that is created when it strikes your head, and the encompassing warmth of the stream, can insulate you from the pressures of the world. I usually take two long showers a day as part of managing the stress that I am overly susceptible to.

     Temperature

One other internal sensory processing channel autistic children often have problems with is temperature regulation. Unable to set their internal thermometer at a comfort zone, some feel hot all the time even in cold weather or cold all the time even when it is warm. As their nervous system is on high alert and blood leaves the extremities to deliver oxygen to internal organs and muscles, many suffer poor circulation and their hands and feet are always cold. Adjustments need to be made to avoid worsening these conditions. It autistic children desire to go outside in cold weather with minimal clothes, allow them this as long as they don’t damage their health, even if it makes you uncomfortable in your normal skin thinking about how cold you would be – you are not them and do not experience the world the way they do.

     Materials That Can Help

There are many materials that have assisted parents in care givers in aiding sensory integration and bodily comfort, thereby reducing stress levels for some individuals. The following materials have been used very successfully as accommodations for autistic children: tumble form chairs, bean bag chairs, chewy and crunchy things, weighted vests, foot or hand vibrators, light boxes, tinted glasses, earplugs, earphones and heavy, padded clothing.

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