By Rebecca Kelley
Staff Writer
The Johnson family in Goodrich look like any other family in the community, however there is one thing that sets them apart? all four of Jim and Kathy’s daughters have autism.
‘My daughters look no different than any other child, you can’t see the disability. Autism isn’t like a Down Syndrome or disabled child who is unable to walk,? said Kathy Johnson. ‘There is also no way to diagnose the disorder, for instance with a blood test or image screening.?
When the girls were young, the Johnsons said autism wasn’t given the same media attention it is getting today. ‘We didn’t know what we were looking at,? said Jim Johnson. ‘In fact, we had no idea our children were born with autism.?
Having four daughters with autism goes against the odds. The Autism Society of America reports there is a gender gap; more boys are born with autism than girls. They have reported that one in 150 births of American children are diagnosed with autism, and one in 94 are boys.
Kathy said she thinks it was a genetic pre-disposition with the right combination. ‘For me the fact that Jim and I have four daughters with the same neurological disorder tells me matching markers came up in the right combination for it to happen. It seems to me, that if immunizations were the problem, it would be broader based,? said Kathy.
According to a report on autism this week on CNN, researchers are investigating a number of theories, including the link between heredity, genetics and medical problems.
The report said that in many families, there appears to be a pattern of autism or related disabilities, further supporting a genetic basis to the disorder. While no one gene has been identified as causing autism, researchers are searching for irregular segments of genetic code that children with autism may have inherited.
CNN also reported that it appears some children are born with a susceptibility to autism, but researchers have not yet identified a single trigger.
On Dec.18, 2007 the United Nations General Assembly, by unanimous consent, passed a resolution designating April 2 as World Autism Awareness Day (WAAD), starting in 2008. The entire month of April is also now designated as National Autism Awareness month.
Kathy said she is happy that autism is receiving the extra media attention.
‘In the old days, there was nothing, no hope of treatment, education or training. It was only 30 years ago when children with autism were institutionalized. That was the answer for many people,? said Jim. ‘With the early intervention and intensive therapy, huge leaps have been made where communication can be created. Once that happens, it opens up so many possibilities.?
Getting as early a diagnosis as possible, Jim said, is crucial.
‘When the twins were about 2 (years old), I noticed that they knew shapes and colors like a 6-year-old. However, their verbal skills were like a 6-month-old,? he said.
Jim said it wasn’t until the girls were in a PPI (Pre Primary Impaired) school in the Genesee Intermediate School District when the teacher asked, ‘Have you ever heard of autism?? that the dreams every parent has for their children were dashed.
‘When I was pregnant, I had all of the same high hopes and expectations for my children,? said Kathy. ‘Will my child be a teacher, a congressman, maybe a lawyer? When I heard the word autism, I figured the slate was wiped clean and I could no longer make any assumptions. We were wondering if they would even learn to talk. It was like everything was gone and we didn’t have any idea what the future would hold.?
It has been the Genesee Intermediate School District and Goodrich School District, the Johnsons said, that have made all of the difference. ‘They saved our lives,? said Jim. ‘Everybody worked very hard to help us. We were partners with them. We got a lot more done as partners, instead of fighting.?
If a parent suspects their child has autism, Jim said one of the worst things they can do is go into denial and ignore it. ‘Don’t be embarassed, because it isn’t a reflection on you. Look at it that your child is qualified for services. The more services they get, the better it will be in the end,? he said.
Today, instead of their four daughters being regarded as low-functioning, biting, tapping, flailing and screaming instead of talking, they are considered high-functioning, are able to talk and take some direction from teachers.
Now mainstreamed into local public schools, Rachael is a student at Goodrich High School. Aletha, Deanna and Kyleen are students at Goodrich Middle School.
‘My girls still have an inability to communicate and socialize like other neurotypical people would, so we still aren’t sure about their future as adults,? said Kathy.
For that reason, they are working with Genesee County and other foundations to establish a group home for people with autism to help them learn how to transition into adulthood.
‘We want a facility where the children will be in a safe environment with no governmental control. It could be a self-sustaining facility such as a farm for them to work on,? said Kathy.
Autism Support Group of Genesee County, www.geneseeautism.org – President Cheryll Ennest – 810-694-8034.