Friday, December 2, 2011

Tommy's Story- A Young Man Battling Autism

This past Thanksgiving, my family was invited, once again, to my sister-in-law Maria's home to share our holiday meal with her husband and their five children. My mother-in-law and father-in-law also attended, and since I did very little of the cooking, our meal was, of course, exceptional. As fine as the cooking always is though, I find the greatest pleasure in spending time with those I love so deeply, but whom I seldom see often enough.
Lives are busy, and, in Maria's and Bob's case, it is extraordinarily so. Besides the demands of raising a large family, their eldest son, my Godchild Tommy, has Autism, and as anyone whose life has been touched by this condition knows, an enormous amount of love and energy is required to care for a child who suffers from this. He is 22 years old now, and his parents have been relentless in their efforts to help him, in any way that they can, since the day he was first diagnosed. Their tireless undertakings seemed to be rewarded though, and until last November they had managed to provide him with a life, both full and happy; suddenly and unexpectedly that all changed.
Tommy, who is non-verbal, and therefore, unable to shed any light on what was troubling him, began to behave in ways totally unlike how he had behaved in the past. His normally contented disposition changed, and he became aggressive, lashing out at others, both at home and at school. He started to engage in violent behaviors which resulted in self-injury, such as striking his face until it became battered and bruised. He experienced a dramatic loss in weight, as well as a change in his sleep patterns. Activities that once provided him with pleasure, no longer did so, and his world, already limited by the ramifications of his Autism, began to get smaller and smaller.
Driving in the car, for example, an activity that he had always enjoyed in the past, suddenly began to cause him unrest, and he would attempt to get out of the vehicle, or wrench away the steering wheel from his mother, as she would drive. The vocational school he attended was forced to call the police for assistance, to take him to the hospital, when he began to act aggressively towards other students or staffers. On more than one occasion it took upwards of four grown men to restrain him as he struggled; someone who appeared to be fighting for his life, for reasons no one else could fathom. He would attempt to escape from his house, at any given opportunity; running frightened, down the street, into yards of strangers who knew nothing of his illness. The family feared for his safety, concerned that he might be struck by a car, or injured by someone who viewed his behavior as threatening. With a deepening sense of panic his parents and siblings sought to find the reasons for whatever had caused these heart-breaking changes, but much to their despair, for the most part, they found little help within the medical community. Although the Hippocratic Oath promises that every doctor will do his utmost to help those who suffer, it seemed not to apply to a young adult who was Autistic, non-verbal and combative. Whether their hands were tied by worries of malpractice, or their hearts were closed by a case too difficult to diagnose, they showed little compassion to a family in desperate need of answers.
After being shuffled back and forth between hospitals, and from doctors who found it easier to refer the family to another specialist, rather than to look harder for the answers themselves, Maria made a very fortunate phone call to a pediatrician Tommy had seen when he was younger. Although Tommy was now an adult, the doctor agreed to see him, and it was this learned man who finally gave Maria the first diagnosis that made any sense. He said he suspected Tommy suffered from PANDAS.
The Behavioral Neurotherapy Clinic describes the condition in this way:
"Although rare, PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus. What does all that mean? Basically, it means that when the body's defenses are trying to attack the Streptococcal bacteria causing a sore throat, there is some degree of mistaken identity and it also attacks some parts of the brain.
The autoimmune attack is thought to occur on closely related parts of the brain, causing a range of behavioral and emotional problems. When first discovered PANDAS was linked to obsessive-compulsive disorder, Tics and Tourette
 syndrome. Mostly because these abnormal behaviors are overt and easily recognized.
Tics can be uncontrollable movements, such as eye-blinking or shoulder-shrugging, or automatic noises such as throat clearing, grunting or saying certain words repeatedly. More recently PANDAS has been associated with a wider range of related behaviors. Affected children can have any combination of the following symptoms:

Cognitive inflexibility, difficult to reason with, as if stuck on an idea,
Obsessive/repetitive/compulsive argumentative behaviors,
TICS (repetitive vocalizations of body movements), 
Tourette syndrome, 
Attention deficits and oppositional/defiant behaviors."
When Tommy was tested for strep titers his exceeded 3000. The normal range is generally considered to be between 0-250, although some labs go as high as 400; Maria's results were 7.
Because his condition has probably been ongoing, judging by the results of his strep titers, restoring Tommy's health may be more challenging than it would be had his condition been recognized early. Additionally, since administering medication to him or getting blood work done is so difficult the road ahead is still a long one. The pediatrician who first suggested Tommy had PANDAS was not familiar enough with the condition to treat him, and the few doctors who are willing to help are located out-of state. Yet, at least there is hope again, as distant as it may be.
I write this, with the permission of my sister-in-law who graciously allowed me to share her family's story, in the hopes that it might serve two purposes. First, to educate those who read it as to the existence of PANDAS, and also to draw awareness to the enormous gap in medical care relating to adults with Autism. When Tommy was first diagnosed I had never even heard of the condition; now, with the advances made in diagnosing it, Autism has become painfully familiar. Although it is encouraging to see very young children receiving the early intervention that can improve their lives so dramatically, the absence of that same kind of attention for adults with Autism is truly disheartening.
It is my sincere hope that some good might come from this story; that today you might be touched by the words I have put to paper for a boy who is unable to say them himself. How unimaginably lonely it must be to live in Tommy's shouldn't be made harder, because he can't receive the medical care that the rest of us take for granted. 


  1. May God continue to teach us through Tommy. My heart feels for him. I pray that this new year brings new treatment for a child of God that is deserving to be treated as if it were the doctors own child. Thank you Amy for sharing Tommy's journey to live with Autism and the unknowns. It truly has made me thank Him tonight for the ability to feel and to let it out.

  2. Have been doing some studying on antibiotic's and mental disorders,controversies on it from some but time will tell.It is a every hard road to travel for families and their loved ones.

  3. I hope they continue to find hope for Tommy. Autism and its other effects are hard to understand unless you are going through it . This may be a stupid suggestion but that actress Jenny McCarthy seems to have done alot of research, as her son has autism. Maybe in her travels she has come across someone that could help.
    I have a friend who has 2 of her 3 children mentally retarded due to vaccines. They are adults now and there is a whole new set of problems. It is heartbreaking to see them ,both beautiful children with blank stare in their eyes. Both were born normal. These children are fortunate to have very special parents .
    Thank you Amy for telling Tommys story .

  4. God Bless You, Amy, for writing this in an attempt to find help for Tommy, his family and others suffering with the same heartaches. Most of us feel helpless in knowing how to help, but there is one very important thing we can all do and that is pray for Tommy and others who are on the same difficult journey.
    Prayer is powerful.