Trying to Figure it out and Surviving the Autism Diagnosis

[Guest guest]

Lynn.

Our family survived the Autism diagnosis; but there were many times I

thought we weren't going to make it. My son was diagnosed when he was three

by the leading authority on Autism in the Twin Cities. She told us

would never be okay and the best we could hope for would be that one day our

son would be running a computer in the basement of some company where he

would not have to deal directly with people. My husband and I couldn't

accept this life sentence and went from doctor to doctor trying to find

someone or something that would help our child. Unfortunately back then,

most doctors did not even perform a cursory exam because they didn't believe

children with Autism could get better. They had nothing to give us, not

even hope.

Today just turned twenty. He drives, has friends, and does all the

things the doctors told me he would never do. , a sophomore at Santa

Clara University on a

half-ride merit scholarship, studies Mechanical Engineering. He loves it

there and has a 3.8 GPA. fits in quite nicely with all the other

nerds, is president of Hillel, and has a ton of friends. Who would have seen

that one coming?) He is truly a success story and we need to make this

happen for all kids with Autism because there are thousands of kids NOT

getting better every day.

When my son entered kindergarten at age six, he was in the third percentile

for speech. By that time we had been seeing Dr. Goldberg in

Tarzana, California for about a year. Most medical doctors are just

starting to accept what Dr. G has known for over twenty years. Autism, as

well as Attention Deficit Disorder (ADD), Attention Deficit Hyperactivity

Disorder (ADHD) is the result of a medical condition. It's pretty

complicated, but the way I understand it, my son's immune system was out of

control. Like other children with Autism, his immune system worked overtime

and produced too many disease fighters for too long. At other times it did

not produce enough.

There is no magic pill to help children with Autism. Trust me, we searched

everywhere for it. Dr. G used hard science and worked for years to give

a working immune system. He still monitors his medications. While Dr.

G helped him medically, the real work started. We had to teach

everything he missed while he was not really with us. It was like

rehabilitating a stroke victim.

We treated 's Autism medically, educationally, and behaviorally. After

his immune system became more " normal " we used behavioral interventions to

help him catch up on what he missed when his immune system was compromised.

We used Applied Behavior Analysis (ABA) until he learned enough for us to

teach him more naturally like other kids. But we encountered many ABA

providers who were just there to take your money and weren't really doing it

correctly.

It took years for these kids to become sick and it takes years to recover.

You don't wake up one morning and BAM they are better. Even if one could

wave a magic wand and make their bodies normal, they would have to learn

everything they missed while they were sick. And I did have to teach him

everything and it was not always an uphill climb. I taught him how to cry

instead of scream and how to smile naturally instead of always looking

angry. The thing that made me the angriest was that I had to teach what

other kids just learned naturally.

By the third grade, my son tested in the 85th percentile for speech. Even

so, my son had an aide in the classroom through fifth grade to help with

organization and social situations. After the fifth grade, his special

education file was closed and he no longer received any assistance at

school. But he still wasn't " normal. " Although he was no longer looked

like he had Autism and was ahead academically, socially he was still behind

and didn't act like other kids. At the time, I couldn't imagine him living

a productive life complete with independence, a wife, a job and kids. Most

of what I did was so I wouldn't have guilt later when placement might have

to be considered. Thank god for guilt.

When my son was little, the hardest thing was to keep talking to a kid who

gave me no indication one way or another that he cared about anything I said

or did. I had to keep treating him like he was normal with discipline,

rules and positive reinforcement even though he didn't act normal. I didn't

change the world to make his life easier; he had to change to fit in the

world. And I used everything he liked to motivate him. Often we were so

busy concentrating on the behaviors we had to eliminate, that we didn't

realize how much he progressed. Gradually one day we'd realize some of the

weird behaviors were gone.

Although now no one can tell my ever had Autism, we still work on

stuff. This year he lived in a suite with seven other freshmen. We had a

rocky start with the social dynamics. He never told the college or his

roommates about his Autism. One of his roommates was dealing drugs and

girls sleeping over with other roommates made it impossible for him to get

adequate sleep. Any kid would have trouble dealing with these complicated

social issues. Much to my surprise he maneuvered throughout the system and

took care of things. The roommate stopped dealing, the other one only had

girls on weekends, and they all seem to get along fine.

The difference is now we deal with normal kid stuff. My husband and I were

just commenting on the fact that is now the easy kid instead of our

daughter and how we never thought that would happen. Are we ever done with

our kids? I don't think so. My daughter is twenty three and I still talk

to her when she is wrestling with a problem. Is my son the most popular,

outgoing kid at school? No, but he is happy, has friends, and has a fun

sense of humor that makes everyone enjoy his company.

It is possible for our kids to be " normal " and lead happy, productive lives

if they receive medical treatment from someone with expertise like Dr.

Goldberg, get behavioral and educational intervention and have parents that

don't give up on them. However even though some of Dr. G's patient's are

better medically, they still appear affected because the educational and

behavioral piece was missing in their recovery. And some kids have systems

that are so messed up; they can improve but not fully recover medically.

However, in most cases there is a " normal " kid in there and I hope one day

we can make what Dr. Goldberg did for my kid the norm rather than the

exception. We can't give up on these kids no matter how much they try to

make you. They can get better.

Marcia Hinds

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