Matthew's Story

By Diane Savage

Chapter from the book
Recovering Autistic Children
Edited Stephen M. Edelson, Ph.D. and Bernard Rimland, Ph.D.

Diane Savage's son, Matt, is a highly accomplished professional jazz musician, with many public appearances and several CDs to his name—and he's not even a teenager yet! Matt (who was born in May 1992) lives with his parents and his sister in Massachusetts. This story was written in September 2001.

My son was born nine years ago. He was always different from other children, even from birth. He was colicky for four months, crying inconsolably every day for hours on end. None of the standard calming techniques worked. Matthew couldn't even ride in the car seat like most children—he would scream hysterically until we stopped and took him out of the seat. As you can guess, we never went anywhere. Changing diapers and giving baths were traumatic. All Matthew wanted to do was to nurse, in the dark, with nothing going on around him. He was very jumpy, never slept, and was very fussy. He would line up toys and do things over and over again. He would be traumatized if one of his rituals could not be followed exactly as he expected it should be. He always walked (actually, ran) on his tiptoes, turned his head sideways, and waved his arms. My husband and I couldn't understand how other parents could just let their children loose to play nicely with other children. Our son would not play with others. He'd usually be dismantling something he shouldn't be touching, or running away from any sort of interactive experience. Every outing ended in a tantrum. What misled us was the fact that Matthew had an extensive vocabulary (because he was echolalic), he was reading everything in sight (because he was hyperlexic), and he was highly intelligent. We thought his hyperactivity and distraction were due to his constant curiosity about how things worked.

Matthew was extremely defensive in response to sensory input. We couldn't watch television when he was around. Vacuum noise, popcorn poppers, any unusual sound would cause him to cover his ears and become agitated. He was also tactilely defensive and highly perseverative. His saving graces were his hyperlexia and extreme intelligence.

Needless to say, my husband and I searched for answers. We were told that Matthew had pervasive developmental disorder (PDD), possibly Asperger syndrome, with hyperlexia. After contacting the Autism Support Center for information, we followed through with extensive research and got into the “parent network” to find the best help for our son. Fortunately, we found a wonderful program for him, and he has blossomed in the years since his diagnosis. He has had the benefit of private speech, occupational, and psychological therapy, in addition to an excellent school environment flexible in balancing mainstreaming with separate classroom situations. You'd never know this was the same child.

One thing that was difficult for us was that although as a young toddler Matthew seemed to enjoy singing and quiet music, he lost this ability at approximately 18 months of age. He couldn't tolerate listening to music in any form and wouldn't sing. We couldn't sing “Happy Birthday,” listen to music, or sing songs with him the way we used to. When he was approximately four years old, we heard about a controversial therapy called auditory integration therapy (AIT), created by Dr. Guy Berard in France. We spoke with many people about it, and came to the conclusion that it certainly wouldn't hurt for us to try it on Matthew, and it might possibly help. We had heard of other children who had shown positive results, ranging from speaking to focusing better to being less hyperactive. There was an individual who performed this treatment locally, so we decided to try it. Matthew had all of the classic symptoms of a child who might be helped by AIT, including extreme sensitivity to sounds and sensory defensiveness.

Even during the treatment, we noticed immediate and dramatic changes in Matthew. By the time he had completed the ten-day treatment, Matthew noticed the world around him &elip; the sound of birds singing, the hair on my husband's arm, plants in the garden, the texture of our carpet. Even more miraculously, his sensitivity to music and voices was greatly reduced. Suddenly, he was singing, loved math, and started asking questions! He had never asked questions before. He started making great strides in his development. We had not told his teachers that he had received the therapy, but suddenly we were receiving reports of new things Matthew was accomplishing. We were thrilled.

Not long after this, we started looking for other “nontraditional” therapies. We ordered a copy of the evidence-based medical approach Protocol, and started testing for things like allergies, heavy metals, yeast, and intestinal problems. Matthew had always been very small for his age and had had constant diarrhea. We found several things we were able to address, including leaky gut problems, allergies, yeast, and absorption problems. We completely revamped his diet to become wheat-free, dairy-free, dye- and chemical-free, and as organic as possible, and we eliminated foods to which he had shown an allergy. We saw immediate results. Within 24 hours, Matthew started writing. He had avoided it entirely before this because it was so difficult for him. Now he was writing whole sentences, drawing pictures, and just HAD to get things down on paper, especially anything related to mathematics. Matthew started taking special supplements and vitamins to give his body what it needed: nystatin to combat systemic yeast, Super Nu-Thera (a B6/magnesium supplement created by Dr. Bernard Rimland and sold by Kirkman Labs), Creon5 (an enzyme) to help him break down food, and lots of other vitamins prescribed to him by his doctor. He started making even more progress. He had better eye contact, more energy, normal digestion, more desire to interact, and better focus. The only thing that was difficult initially was Matthew's adjustment to the changes in his body. Once he adjusted, the results were more and more positive.

Now that Matthew is nine, he has come very far. We tried a second round of AIT therapy when he was almost 6 1/2 and found that he showed even more improvement. Suddenly he started playing music. He started with a toy piano, graduating to a keymonica and then to a piano. I taught him the basics and then gave him several beginner piano books. From there, he took off on his own. Before he took his first teacher-taught piano lesson, he could sight-read perfectly. He had absolute pitch, knew a great deal about piano terminology, automatically knew music theory, and could play anything “by ear.”

He took one year of classical music lessons, flying through books and piano pieces that normally take years to learn. He loved playing, and especially loved playing variations on the music. He would transpose the piece to another key, play improvisations, turn the music upside down and play it. We were amazed at his great flexibility, and at his ability to cross midline with his hands and cross one hand over the other with ease. These are monumental accomplishments for a child with autism. The only issue with which Matthew sometimes struggles is his fear of “making mistakes.” Sometimes he wants to avoid a piece because he looks at it and says he won't be able to play it perfectly. We are always reassuring him that mistakes are part of life, and that if he breaks the piece down into two parts (the right hand and left hand separately), he can learn each part and THEN try playing the parts together. He has become much, much better about this, and this step-by-step approach is starting to make its way into his life in general. Breaking down a big problem into smaller pieces will always be difficult for him, however.

We wanted to encourage Matthew's natural improvisational ability, so we contacted the New England Conservatory of Music and had him audition. They were amazed at his abilities and knowledge, and took him on as a jazz student for private lessons. Matthew can immediately tell the key in which a piece is written, can identify four notes played simultaneously, and plays everything from jazz to blues to classical to improv at a moment's notice. He just loves piano. I've even seen him face away from the piano, put his arms back, and play a blues piece! My husband and I love to listen to him play. He has played in several piano recitals, including one for gifted and talented students. He was the first autistic child allowed to play at this particular recital. I think half the people in the audience were people who have been involved in Matthew's life and wanted to see how far he has come.

Don't misunderstand me. There are many, many difficulties with which Matthew copes every day. He still shows signs of his autism. People immediately notice him in a group! He still has inappropriate behaviors and regresses in new situations. But he is making progress. We focus on how many things he has been able to accomplish, not on the things with which he will always struggle. He made the transition to a fully mainstreamed third grade class at school last year. And although there have been a few glitches, fourth grade this year has been wonderful. Matthew LOVES school. We are very proud of him.

To raise awareness (and funds) for autism research and support, we put together a CD of solo piano (jazz/blues/improvisation) on which Matthew performed. The title of this first CD was “One Is Not Fun, but 20 Is Plenty.” The name was taken from a poem written by Matthew. The CD includes many elements—readings of my own poetry describing life in a “special needs family,” interpretation and performance of these poems in music form by Matthew's professor at the New England Conservatory, readings of poems written and performed by Matthew, and many, many original piano pieces composed and performed by Matthew. It is really remarkable to hear Matthew being a child, and then hear him playing a magnificent piece. But that's the nature of autism. Different children have different levels of abilities, and different behaviors.

Matthew released a second CD (and first solo piano effort). You DEFINITELY will enjoy the CD. Matthew composed or improvised ALL of the piano pieces on it except for three tracks. The name of the new CD is “Live at The Olde Mill.” It was recorded in two parts. The first part was recorded at a live performance given by Matthew last summer at The Olde Mill Restaurant in Harrison, Maine. The second part of the CD was recorded this past December in a studio. Matthew still sounds like a young musician; however, his emerging talent shines through and makes for a wonderful collection of music. Matthew listens to jazz and classical music constantly, and is composing increasingly impressive pieces. His most recent ventures have been into the world of jazz ensembles. You need tremendous awareness of other people and subtle interpersonal communication skills to play in an ensemble. Matthew is already making great strides. He is truly gifted — gifted beyond imagination.

The most recent news is that Matthew has started his own trio, The Matt Savage Trio. It is composed of two adult sidemen, John Funkhouser on bass and Steve Silverstein on drums. Both men are accomplished, world-class musicians who teach as well as perform.

The Matt Savage Trio has recorded their first CD as a group. It is entitled “All Jazzed Up,” a name taken from one of Matthew's original compositions. It is a professionally recorded live performance by the trio during August of 2001 at The Deertrees Theatre in Harrison, Maine. Most of the pieces on the CD are original compositions by Matthew, although there are tunes by Charlie Parker, Miles Davis, and Billy Strayhorn. It is unbelievable to witness Matthew's musical accomplishments over such a short time.

Copyright © 2003 Diane L. Savage. All rights reserved.

Update (February 2003):

Matthew is almost 11 now. He continues to make daily progress, and I believe his music and the experiences he is having because of his music have contributed to this progress. He is still taking his vitamins and supplements and is starting to grow and put on a little weight, although he is still small for his age. He is also still on his GFCF diet, although we allow a bit more flexibility now as his most recent allergy tests indicated a great reduction in allergic reactions to foods. He is also getting stronger, and is more coordinated. He is able to do many things he wasn't able to do even a year ago, such as ice-skating. At the same time, he is beginning to show signs of preadolescent angst and emotionality.

Matthew is still the leader of his own trio, The Matt Savage Trio. And they have recently released their third CD, entitled “Chasing Your Tail.” It was recorded at a live concert and contains mostly original material written by Matt.

We take everything on a day-to-day basis, and do NOT push the music. Matthew makes all of the decisions about where and when he performs. And I limit his travel. I believe that being with family is more important than performing gigs for both him and us! But we do encourage him and support him. We also encourage and support our daughter. I believe that both of our children are thriving because we love them no matter what they do, we accept them for who they are as individuals, and we listen to them. We listen to their needs, their fears, and their dreams, and help to guide them along their path. But we let them set their path, as winding as it may be.

You can order the group's newest CD (or any of Matthew's CDs), learn more about Matthew, or find out where Matthew is performing by visiting our website: www.SavageRecords.com.

Update for Second Edition (October 2005):

Matt has continued to thrive, as he has continued using the evidence-based medical approach Protocol. He is still on the GFCF diet and still takes supplements such as Super Nu-Thera and other vitamins to help him maintain his health and energy level.

He continues with his love of jazz, performing worldwide and traveling.