A "sensory disorder," or a dysfunction of any specific sense (hearing, balance, vision, and so on). Exaggerated responses (fear, anxiety) to normal sensory stimuli are very common, but the response is probably not simply a normal response to an exaggerated or distorted sensation. (There may be a disorder in how sensory information is processed, but it is not likely as simple as "too loud" or "not clear.")I am stunned! Pamela had several very specific auditory sensitivities that harmed her quality of life. She still has some, but she is now able to avoid sensory overload by covering her ears, leaving the room, or using calming techniques. I think back to the time Pamela could hear the box-crushing machine at the back of the grocery store and refused to enter the room. Another time she complained about bees in our apartment: the fluorescent lights in the hallway were on the blink, and I had to open the door to figure out that. I am convinced her hearing is more acute than mine is!
These comments do not square with eyewitness reports of autistic people themselves. In one interview, Temple Grandin describes her altered hearing as a child:
My hearing is like having a sound amplifier set on maximum loudness. My ears are like a microphone that picks up and amplifies sound. I have two choices: 1) turn my ears on and get deluged with sound or 2) shut my ears off. Mother told me that sometimes I acted like I was deaf. Hearing tests indicated that my hearing was normal. I can't modulate incoming auditory stimulation.Here is how she describes her hearing today:
I am unable to talk on the telephone in a noisy office or airport. If I try to screen out the background noise, I also screen out the voice on the telephone. Autistic people with more severe auditory processing problems are unable to hear a conversation in a relatively quiet hotel lobby.Thomas McKean is an adult with autism who describes his hearing in this way:
Also due to an operation in my right ear when I was very young, I am losing hearing in one ear. And so the frequencies of each ear have different sensitivities. So sometimes when I hear one thing coming into both ears, it sounds like two separate sounds and my brain tries to separate them. This is confusing because you can't separate only one sound. Add to that the natural hypersensitivity to noise that people with autism have. So I am deaf to some tones, hypersensitive to others. Processing audio is very difficult for me to do. I have learned though that it appears to be necessary so I do the best I can and I am still trying to learn ways to do it better.He did undergo auditory integration training (AIT) and experienced mixed results. The AIT worked wonders for a few months, and then his hypersensitive hearing returned:
It has been many years since my ears have been normal, until now. I had forgotten what a pleasant experience it was to be able to hear like everyone else. I do not know what caused it to go back to where it was, perhaps think it was just meant to be. Auditory training works, but like all things, it does not work for everyone.He concludes:
I am now convinced that auditory training does indeed have beneficial effects for many individuals. It is NOT an experience I wish to repeat, but the end results may justify the means if the procedure is done correctly.What Thomas tells parents to do is exactly what we have done with Pamela. He is absolutely right for these tips have worked wonders for Pamela:
I have noticed over the years, and I have no scientific data to back this up, it is merely an observation of one seasoned advocate, that there is a correlation between auditory dysfunction and violent behavior in the person with autism. If your child is acting violent (for no apparent reason), check the environment. It may be something you don't even hear yourself, like fluorescent lights. Take them someplace quiet and calm so they can get themselves together. Other sensory bombardment causes the same reaction, but I have noticed that auditory problems are the worst.Thomas describes what he perceives during sensory overload caused by a trip to a very large mall:
I vaguely remember the car ride back to the apartment. All visual input was reduced to geometric shapes - clouds and fogs - mere shadows of substance. Color had no meaning and ceased to exist. My voice was completely gone. My world had become a hideous black and white distortion of reality. All auditory input was magnified in volume and echoed very painfully in my ears. Everything my hands and feet touched felt like flames. When we arrived, I collapsed in the bedroom and started crying for the first time in many years.Once again, I find Thomas's recommendations in addressing sensory overload to be exactly what has worked for Pamela. He finds tactile input from a friend; Pamela responds to deep pressure hugs. He needs people to follow his cues; when Pamela tells us she needs to stay home, we respect her wishes and give her down time. He seeks a quiet place in the environment; Pamela craves the same thing! Darkness comforts him; we used to throw Pamela's big, navy blue blanket (her trusty companion for the past ten years) over her head to calm her. Because Pamela has responded so well to these tactics, she has not needed medication, which was another solution Thomas suggests.
Donna Williams has posted several articles about the sensory issues she faces. What she writes fits how Pamela communicated when young. Now, her stored lines make more sense, thanks to the association method:
My senses and perception were chaotic, fragmented and constantly shifting and fluctuating and the ability to understand things with meaning was so delayed I looked like I wasn't 'on line' but also like someone very behaviorally and emotionally disturbed. I stored huge strings of sound patterns and sang and chattered to myself most of the time, often in stored lines, jingles and adverts.Since extreme ABA proponents deny the validity of distorted sensory perception faced by people with autism, they do not see the point of attempting to change the environment and teach children calming tactics. They refuse to try sensory -based strategies because they believe the child perceives the world the same way as everyone, but reacts in an exaggerated manner (high anxiety and extreme fear).
Back in January 1993, I read The Sound of a Miracle, and we decided to try auditory integration training (AIT), a mechanical means of achieving an improvement in auditory discrimination through an intensive form of music therapy. The AIT Institute describes it in this manner:
AIT is an educational intervention that efficiently retrains a disorganized auditory system. Auditory Integration Training (Berard AIT) is a scientific method of retraining the ear to listen and to process sounds in a more normal manner, without distortions and delays. While no guarantees can be made, Berard AIT is documented to have profound positive effects on many different types of individuals.I contacted Louisiana's first person qualified as an AIT practitioner, Susan Boudreaux (we became friends and still keep in touch by email on a regular basis to this day). The first opening we could make was in June 1993. With Pamela's birthday coming up in March 1993, I decided to "test" AIT by trying to desensitize Pamela to candles for, like Georgie Stehli, Pamela could not blow candles on her birthday cake. I tested her and found that she could blow things like bubbles and paint out of a straw (to make bubble pictures). She could even blow an unlit candle!
A few weeks before her birthday, I placed an unlit candle at the end of the kitchen table. Pamela remained calm and relaxed. The moment I lit the candle, she covered her ears with her hands, tilted her head sideways, and hummed to tune out the candle's flickering noise. She did learn to blow from across the table. The closer I pushed the candle to her end of the table, the worse her performance became. No amount of bribes or comfort could encourage her to blow once the candle was too close for comfort. This was before I understood the principles of DTT for I read Let Me Hear Your Voice a year later, but I did make a concerted, daily effort to train her to tolerate one lit candle. When her fourth birthday rolled around, she still refused to blow out her candles.
That June, Pamela spent two weeks undergoing AIT using the original Berard audiokinetrons. During the training, something astounding happened. Elevators and escalators instilled panic and high anxiety in Pamela. At malls, we had to veer as far away as possible from these dreaded beasts, or Pamela would throw herself on the floor and tantrum. When we could not avoid straying too close, I would calmly repeat my mantra, "No elevator! No escalator! No elevator! No escalator! . . ." I had absolutely no intention of testing AIT at the mall because her reaction was so visceral and so public. We went to the mall, and I did the usual mantra. Suddenly, Pamela jerked my hand and pulled me toward the escalator. She rode it with no hint of fear! I asked her if she wanted to ride the elevator, but she flatly refused and I did not want to blow it. We toured several escalators that day for fun, and Pamela never had another problem with any.
We noticed subtle changes in Pamela. She no longer left the room when I vacuumed the house. She tolerated hand dryers in public bathrooms. She no longer hummed when we crossed bridges with grating. She could sit through a car wash without clawing into the upholstery. All of these things improved her quality of life because she was able to do more things with less fear.
The most exciting change happened in August 1993. Her little brother David celebrated his first birthday. Unlike his sister, he was king of the power nap and fell asleep during his own birthday party. Steve's family attended the party and we already had the cake and candle, so we decided to light it anyway. To our great surprise, Pamela walked right up to that cake without any prompting and blew out the candle. Everyone there had seen Pamela grimace and hum at her last birthday party. There was not a dry eye in the house.
AIT has more published studies than sensory integration. One blind study found that AIT reduced problem behaviors, while another blind study saw significant improvements in auditory problems and aberrant behavior. Some of the research includes non-blind studies too. While one site emphasizes a recent study that failed to show the benefits of AIT, the AIT Institute summarizes twenty-eight clinical studies (not all blind/placebo controlled) in this manner:
Twenty-three reports concluded that Auditory Integration Training benefits various population subgroups, three studies claim to show no benefit (or no benefit over that seen in a control group), and two studies reported rather ambiguous or contradictory results. Considering the great difficulties in both providing a credible placebo treatment and assessing improvement in the subject populations, these results are quite encouraging. The balance of the evidence clearly favors Auditory Integration Training as a useful intervention, especially in autism.One thing to keep in mind when contemplating any therapy is the cost versus benefits. One problem with AIT is there is no guarantee it will help. Trying to predict what child will see positive changes in behavior is impossible. The average dollar cost of twenty Berard AIT sessions ranges from $1,200 to $1,500 in the United States, and the investment of time is a total of ten hours (two half-hour sessions per day, spread out over a two-week period). Parents considering AIT must be willing to lose up to ten hours and up to $1,500 and see no benefits. The possible benefit is a reduction in challenging behaviors related to auditory hypersensitivities and some improvements in auditory processing and speech (which we also witnessed with Pamela). AIT can be done in conjunction with other therapies like ABA!
The Cambridge Center for Behavior Studies has performed cost-benefit analysis for ABA. They focus upon four skill domains (language, social, adaptive, and academic), but ignore sensory sensitivities, emotional relatedness, and biomedical issues. The longest, best-documented study (Lovaas, 1987; McEachin, Smith, and Lovaas 1993) found that forty-seven percent of the children were able to function independently and successfully in regular classrooms. Another forty percent improved substantially, but still needed specialized intervention. Ten percent made minimal gains and continued to need intensive intervention. The best outcomes in studies on ABA require at least thirty hours per week year around for two to three years, starting before age six. They estimated the average annual cost of these programs to be $33,000 per child, meaning a total of $99,000.
We did not have the advantages of parents today in that ABA did not become mainstream until Pamela was past the magical age of six. I am not sure how we would have approached the idea of having therapists in our home, day in and day out, year round, for three years! However, Sonya Shafer handled ABA with her daughter Hannah in ways that makes sense to me. She has some fascinating insights on the gaps she found in ABA:
We discovered that the ABA therapy we had been using focused on the areas not affected by autism. This is in no way to say that ABA is useless; quite the contrary! ABA is useful for teaching facts, procedures, and absolutes to developmentally delayed children. We intend to continue using it for those aspects of Hannah’s learning.In closing, autism is complicated. There are no easy answers or easy choices. The best thing parents can do is to get as much information as possible and make informed decisions, taking into account the profile of children likely to improve with a therapy, the costs, the risks, the benefits, the research, and recommendations of people with autism, other parents, and professionals. Our children have the greatest chance of improving their quality of life when we see our children as people and address the unique challenges they face. We can only do the best we can with the time, money, and energy we have.