. . .or is it one in 166, or one in 110? Or is it the latest statistic I heard for the State of Georgia–one in 98? The end number doesn’t really matter because whatever it is, as far as my life and his is concerned, Justin is the “one.” Autism Spectrum Disorder has officially touched my family, and, although one in 150 is a statistic, my Justin is not.
I guess I knew it was coming. God had been preparing me for months. Justin has been delayed across the board since he was born. Yes, he was four weeks early. Yes, he spent the first twelve weeks of life trying to remember to breathe. I tried to make allowances for those situations, but by the time he was eighteen months old I could no longer ignore the delays. Justin had said, “Daddy” a few times when he was around fifteen months old. But then he stopped–and didn’t say another word until after he was eighteeen months old. But he did cry–a lot! At the first meeting with the Babies Can’t Wait diagnostician I remember telling her, “He just cries. No talking, no pointing, no waving–just crying.” Not sure why I didn’t pick up on it before then. I had been slightly distracted with helping to care for my terminally ill father-in-law and then taking care of my family after Granddad passed away. But then, also, I sometimes feel like I just woke up one day and realized that Justin was behind. And, I will admit, it scared me.
So our journey began. Doctor visits, some fabulous–some just preying on desparate parents. Money spent (thousands). Evaluators observing him and making their notes. And now therapists coming to our home and making my baby struggle to balance on an exercise ball that terrifies him and then making him reach for a toy. Every week they make him stack blocks, sort colors, thread beads, identify pictures, answer questions, and stay engaged and attentive longer than any two-year-old should be expected. The expectations placed on Justin have not been lowered–they have been raised. And so I sit on my hands, bite my lip, fight my tears, and let the Speech Therapist, the Occupational Therapist, and Physical Therapist do their job. All in all, they are some of the smartest and most insightful professionals by whom you would ever want your child to be served. Early intervention by Babies Can’t Wait ( the State of Georgia program that serves babies 0 – 3 years) saved my boy and minimized the impact of ASD on his life–spread the word to any mom who has doubts about her child’s development.
Recently, at age two and one-half years, and after one more extremely in-depth (and expensive) evaluation, we got our answer– Justin is ”one in 150.” After being evaluated by (another) child psychologist, considered one of Georgia’s best in the field of Autism Spectrum Disorder, Justin was diagnosed with PDD-NOS. Basically “Pervasive Developmental Delay - Not Otherwised Specified”. Some call it “high functioning autism,” although, technically, there is no such diagnosis. The psychologist expects the diagnosis will be changed to Asperger’s Syndrome when Justin reaches four or five years of age. Asperger’s Syndrome, also an Autism Spectrum Disorder, is also often referred to as “high functioning autism”. Autism is the catch-all term and the one most recognized by people. And our son, Justin, is the ”one” in 150 children who has it.
One in 150–wow. Can you imagine the outcry if this rate was that of childhood cancer? How much funding would go into research? I say that as an emotional and uneducated (in the area of research) mom. I really have no idea how much funding goes into childhood cancer reasearch or into autism reasearch. I just think that ”one in 150″ sounds like a really high number. Considering that they just don’t really know the cause of autism, that the immunization theory has been totally debunked, that there is no real cure, and that the statistics are on the rise (especially for boys)–well, sorry–one in 150 is just too high.
Where do we go from here? First of all, Justin’s diagnosis is not our destination, it is our GPS. It will tell us which path to take. It helps us understand where there may be roadblocks and shows us any detours we need to take. And because the “fastest route” is not always best for a child with ASD, it will likley be the scenic route! The fact that Justin has been receiving therapy since he was eighteen months old is awesome. The benefit of early intervention is supported by research and seems to give ASD kids the best outcome. And we have done that. In fact, the last year of my life has been dictated by therapy schedules and doctor appointments. It has been exhausting, but I am thankful that our family has been in a position that I was able to take on this job. We would never have been able to get this last year back, and I thank God He has made it possible for Justin to be served in this manner.
The plan. We are looking at adding some private therapy to the therapy he already receives from Babies Can’t Wait. My wonderful husband, Nate, works for Home Depot. I am ashamed to admit that, until recently, I did not know that one of the co-founders of Home Depot is Bernie Marcus, who just happens to be a huge financial supporter of the Marcus Autism Center here in Atlanta. So we were happy to discover that Home Depot has written a clause into their insurance plan to cover treatment of autism! This benefit is huge considering that Georgia is one of the States where insurance companies are not required to cover treatment of autism. We also have a little farm less than five miles from our house that offers all types of therapy for children with different delays. When Justin reaches age three (this coming September) he will be able to receive hippotherapy (therapy with horses) at this farm if we so choose. I’m not sure how Justin will react to a big horse, but hippotherapy is supposed to be great!! At age three, Justin also becomes eligible for public school services–a fabulous option which we will greatly consider.
Right now I am trying to decide how much of an advocate for Autism that I want to be. Walk Now for Autism Speaks? Or just educating myself so I can educate others? Should we all get t-shirts made and do the annual walk for Autism in May? Hmmm, not sure yet.
Here are some Autism facts (copied and pasted from autism.about.com) These facts are not medical, but from my research seem to be a pretty good summary of some important points. (Scroll down past #10 for my “close.”)
People with autism can be a little autistic or very autistic. Thus, it is possible to be bright, verbal, and autistic as well as mentally retarded, non-verbal and autistic. A disorder that includes such a broad range of symptoms is often called a spectrum disorder; hence the term “autism spectrum disorder.” The most significant shared symptom is difficulty with social communication (eye contact, conversation, taking another’s perspective, etc.).
Asperger Syndrome (AS) is considered to be a part of the autism spectrum. The only significant difference between AS and High Functioning Autism is that people with AS usually develop speech right on time while people with autism usually have speech delays. People with AS are generally very bright and verbal, but have significant social deficits (which is why AS has earned the nickname “Geek Syndrome”).
If you’ve seen Rainman or a TV show about autism, you may think you know what autism “looks like.” In fact, though, when you’ve met one person with with autism you’ve met ONE person with autism. Some people with autism are chatty; others are silent. Many have sensory issues, gastrointestinal problems, sleep difficulties and other medical problems. Others may have social-communication delays – and that’s it.
So far as medical science is aware, there is at present no cure for autism. That’s not to say that people with autism don’t improve, because many improve radically. But even when people with autism increase their skills, they are still autistic, which means they think and perceive differently from most people. Children with autism may receive many types of treatments. Treatments may be biomedical, sensory, behavioral, developmental or even arts-based. Depending upon the child, certain treatments will be more successful than others.
You may have seen or heard news stories about possible causes of autism. Theories range from mercury in infant vaccines to genetics to the age of the parents to almost everything else. At present, most researchers think autism is caused by a combination of genetic and environmental factors – and it’s quite possible that different people’s symptoms have different causes.
Autism is usually a lifelong diagnosis. For some people, often (but not always) those who receive intensive early intervention, symptoms may decrease radically. People with autism can also learn coping skills to help them manage their difficulties and even build on their unique strengths. But a person with autism will probably be autistic throughout their lives.
Even “high functioning” autism is challenging for parents. “Low functioning” autism can be overwhelming to the entire family. Families may be under a great deal of stress, and they need all the non-judgemental help they can get from friends, extended family, and service providers. Respite care (someone else taking care of the person with autism while other family members take a break) can be a marriage and/or family-saver!
You may have heard of a wonderful “autism school,” or read of a child doing amazingly well in a particular type of classroom setting. While any given setting may be perfect for any given child, every child with autism has unique needs. Even in an ideal world, “including” a child with autism in a typical class may not be the best choice. Decisions about autistic education are generally made by a team made up of parents, teachers, administrators and therapists who know the child well.
The media is full of stories about autism, and many of those stories are less than accurate. For example, you may have heard that people with autism are cold and unfeeling, or that people with autism never marry or hold productive jobs. Since every person with autism is different, however, such “always” and “never” statements simply don’t hold water. To understand a person with autism, it’s a good idea to spend some time getting to know him or her – personally!
It may seem that autism is a wholly negative diagnosis. But almost everyone on the autism spectrum has a great deal to offer the world. People with autism are among the most forthright, non-judgemental, passionate people you’ll ever meet.
So, we have quite the journey ahead of us! But we are on the right path and steadily making progress. Justin makes us smile everyday with his “quirky” little behaviors. He has become very verbal, and his communication skills are improving every day. The other day his dad asked him where his shoes were. Justin responded, “they right here–in the shoe bakket–daddy!” Not bad for a kid who was non-verbal just a few months ago! Justin loves his brothers and sister and has become quite “bossy” with them knowing that he often gets his way! Justin’s accomplishments are things that we celebrate as a family. They are that much sweeter knowing how hard he has worked. Justin continues to work hard and is always willing to undergo another session of training. He is a very smart and determined little boy–these traits and his high cognitive function will carry him far!!
One in 150. And I am blessed beyond all I can ask or think to call this “one” mine. Wow.