When a child is determined to have autism, the diagnosis can change life for them and their family.
However, children with autism can still have hope for a fulfilling life and even grow up to make significant contributions as adults, if the community takes a few simple steps.
“What some people may not realize is that autism is treatable,” said Mary Roth, lead ally (counselor) for the Autism Society of Indiana.
One of the first steps experts urgently recommend is earlier diagnosis. In other words, parents should immediately get advice from a medical specialist if they notice that their child has any of the common autism symptoms.
“The earlier you get treatment, the better the outcome is for the child later in life,” said Kristian Little, whose 5-year-old son Jacob, has a moderate form autism.
Having Jacob diagnosed in a timely manner helped Little make the decision to enroll him in one of three area locations of the Behavior Analysis Center for Autism, also known as BACA. It ended up being a sound decision.
“Jacob has made a lot of progress since he’s been here,” said Little.
Jacob has learned – among other things – how to ask for certain items instead of just grabbing them, to play with other children and to brush his teeth. Little laughed as she recalled the day she suddenly learned that he could clean up after dinner.
“We had dinner while a consultant (from Jacob’s school) was in the home,” Little said. “She didn’t have to say a word. After eating, he got up, went over to the trash and nicely scraped his plate and put it in the sink. My aunt and I looked at each other like, Where did this come from?”
According to a study conducted by the University of Pennsylvania School of Medicine, despite the importance of early treatment Black children with autism are often diagnosed a year or two later than their white peers.
“White kids were diagnosed at an average of 6.3 years old, compared with 7.9 years for African-American kids,” said David Mandell, an assistant professor and study author.
In addition to early diagnosis, experts note, children with autism must be provided with the best available education options. In a best case scenario, they can receive treatment at specialized schools that specifically work with children who have special needs, then later transfer to a traditional school.
This process, Roth says, allows both autistic and non-autistic students real-world experience in interacting with each other when they are young.
“Students with autism should continue to be integrated to the maximum extent possible into general education classes,” Roth said. “With autism rates climbing and adults with autism entering the workforce in greater numbers, it stands to reason that we will all encounter people with autism in our lives.”
BACA is among specialized institutions that use nationally accredited specialists on clinical teams that meet with parents and assess the needs – as well as the strengths and weaknesses – of each student, instead of issuing a one-size-fits all concept.
“We really focus on every individual child and the little components and missing pieces that we need to teach them in order for them to make further progress,” said Shiela Habarad, clinical director of BACA.
Every student comes in with a different social skill set. One child, for example, may be able to label items, answer questions and ask for things, but may not be able to respond to directions or interact with other children.
“For every kid, it is so different,” said Habarad. “Getting a student to tie his shoe, or to put on his pants after getting his foot into one leg had been a challenge is a huge accomplishment. Helping them reach that milestone is amazing and a lot of fun.”
Not everyone can afford to pay out of pocket or use insurance for an institution like BACA. Many autistic children, Mandell noted, are taught in classes by public school districts, many of which are dealing with major budget cuts.
That is one reason, experts say, why the community needs to support increased funding for both private and public sources for those with autism.
The community’s role
“Money spent on early intervention and education strategies pays off at a 1:7 rate, compared to dollars spent when the child is older,” said Roth.
Habarad encourages the community to support fundraising events such as the upcoming Walk Now for Autism Speaks walk. Such events generate resources to help families pay for treatment, as well as programs that provide occasional relief and rest to caregivers.
“The biggest thing the community can do is offer donations to support these events, because a lot of money is needed for research, supporting families as well as schools with specific autism departments.”
Little added that research is vitally important, especially since no specific cause for autism has been determined.
“If we can find out what it is, then maybe we could one day, prevent other children’s families from going through this,” she said.
Little and Roth also encouraged the community to learn more about autism so that they can be less judgmental of families they see dealing with it, and more supportive.
“Many members of the general public do not understand autism and instead of taking the trouble to learn about it, lazily blame parents for it,” Roth said. “Hopefully, more people will ask, Is there something I can do to help?”
Robin Bowen, whose 10-year-old son Tre has autism, agrees. She believes that a stronger support network should be developed in the African-American community, utilizing institutions such as churches and neighborhood organizations to raise awareness.
“Our people are lacking in that area. And I don’t know why, because I wouldn’t say that we have any less special needs children than any other group,” she said. “We need to be more aware of and accommodating to families and children not just with autism, but those with all special needs.”
For both caregivers and families, the ultimate goal for autistic children is for them to have a stable as possible life, whether they are living on their own in an apartment near their family, going to college or working a job and utilizing their gift to make a living.
Roth noted that many great people who were believed to have had some form of autism, such as the composer Mozart and scientist Albert Einstein, have graced the world with their inventions and their talents.
“The world needs social people, but also bright, talented and innovative people who are able to achieve the kind of focus that many people with autism have,” she said. “We need, as a society, to learn how to tap into the gifts of each and every person with autism, and give them a chance to make a mark on this world.”
