Autism diagnosis can be the end, or the start

Published 9:10 am Tuesday, April 20, 2010

There are few words in the English language that just upon hearing them can bring a parent to their knees.

Autism is one of them.

As new parents, my husband and I had all sorts of plans for our child. He was going to be a football star and play for the Vikings so mom and dad could have box seats. He was going to be an artist like his mom, and good with his hands like his dad. He’d be a Boy Scout, play Little League, catch frogs and be prom king. He would marry a beautiful woman and have children of his own. I pictured all the wonderful upcoming family holidays for years to come, the school events, the awards, the triumphs and failures alike. I pictured Dad playing catch in the yard with him and me kissing his skinned knee all better when he played a little too rough.

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All of that changed on a fall day in 2004.

I had suspected autism for quite some time before I finally convinced his neurologist. I’m a person thirsty for knowledge, and the Internet is my well. Armed with all sorts of published papers and personal stories, I showed her what I had found, that David met almost all of the “criteria” for an autism diagnosis. Nearly every symptom applied, and we couldn’t ignore it any longer.

She confirmed my suspicions for me and that dreaded word was uttered. “Autism.” Even knowing that was going to be the result of the visit didn’t prepare me for the enormous wave of emotions that flooded over me after hearing it confirmed out loud. In my mind it played out like a movie montage of all of those future memories on super-fast speed, all of the things that would never be. No Boy Scouts. No first dates. No college graduation. No grandchildren. All of the possibilities became impossibilities in the blink of an eye. Little did I know that this really wasn’t the end, but the beginning of a difficult, yet so rewarding, journey of a lifetime.

David had already been a part of Early Childhood Family Education and was receiving home visits from an occupational therapist, speech therapist, physical therapist and a teacher to help him overcome all of these difficulties he had been facing before our diagnosis. We first noticed something was off at about six months of age. David wasn’t focusing his eyes the way he should, but was so far meeting all other milestones on time.

My mom contacted Public Health and a Denver test was administered, which tests developmental progress in children. Since David was still so young, many of the characteristics of autism were not yet apparent, so we decided to visit an eye doctor, who then referred us to a specialist at Mayo Clinic.

Visit after visit and referral after referral brought up new concerns. David was getting older and starting to miss milestones. He wasn’t babbling. He was withdrawn, a loner. Then the partial-onset seizures started, which brought us to Gillette Children’s Hospital in St. Paul, where he would eventually get his diagnosis of epilepsy and autism. Thus began our journey of therapies, vitamins and biomedical intervention.

If you even suspect your child may have autism, even mild, seek early intervention. A good place to start is ECFE. There are many services out there for children with disabilities, so contact your county Department of Human Services. The earlier treatment starts, the more successful it can be. Intensive early intervention of applied behavior analysis therapy can do wonders for a child on the spectrum.

And don’t discount biomedical treatment as hooey. I have yet to meet a child on the spectrum that didn’t have some kind of biomedical issues, whether it be heavy metal toxicity, intestinal problems, vitamin deficiency, etc. There are doctors in Minnesota who treat many autistic children and are trusted by those of us that have been down this road for a while. The best ally a parent has is another parent. Through a Yahoo! group called BEAT-MN, for parents and caregivers of children with autism in Minnesota, I was referred to a wonderful naturopathic doctor in Sartell who, for the three years he’s been treating David, has been our savior.

David is near 9 now. He still doesn’t speak, but we have other ways to communicate, namely through pictures. He isn’t potty-trained. He has trouble with eating and other oral sensory issues. There are many issues we are still trying to overcome, but the gains that he’s made far outweigh those. We are working to get David’s body chemistry back on track, through a process called chelation, which flushes toxic heavy metals from the body, as well as a heavy vitamin/mineral regiment. We still see his neurologist yearly for the seizures, which thankfully are under control with medication. All of this, combined with the wonderful education he’s receiving in the Success Room at Lakeview Elementary School, have made him into a very happy, very active boy.

He still has autism, but it no longer defines him. It’s only one part of the puzzle that is David. As far as I’m concerned, it’s only a small part, because he’s so much more than autistic. He’s my superstar, and I wouldn’t trade him for anyone.

Albert Lea resident Stacey Bahr is the creative director for the Albert Lea Tribune.