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Home / Articles / News / News /  Autism 101
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Thursday, June 17,2010

Autism 101

Families need more help, hope

By Jefferson Dodge

There is no justification for killing your own child. Not autism. Not even the worst possible disease you can imagine.

And still, we are left to make sense of cases like that of Superior mom Stephanie Rochester, in hopes of avoiding future tragedies like hers.

Rochester has been accused of smothering her 6-month-old son due to fears that he had autism. According to media reports, Rochester planned to commit suicide, but feared that the baby would be a burden to her husband. A mental health professional, some speculate she may have had contact with parents whose children were autistic and might have seen firsthand how hard a family’s life can be when a child is autistic.

Local parents who have children with autism acknowledge that having a child with autism can be extremely difficult. They say that Rochester’s story, even if she is found innocent, even if her baby didn’t have autism, is an opportunity. It is an opportunity to highlight the need for more support and resources for such developmental disabilities — not just financial, but emotional, and not just for the patient, but for the families.

And they say there are success stories that should give parents of autistic children a light at the end of the tunnel.

Abigail

“No one in the autism community would condone killing a child,” says Jill Tappert, a Boulder mother who helped secure the passage of a new law that will require insurance companies to cover more autism treatments starting July 1. “With that said, it’s hard. It’s overwhelming. There were days when I wasn’t sure I was going to make it to the next day.”

Tappert says her daughter Abigail was diagnosed with autism when she was 2. And that was actually a good thing, since most kids with autism don’t get diagnosed until around age 5, even though parents often suspect it earlier. A diagnosis within the window of about 1 to 3 years old means that various treatments can be significantly more effective in improving the child’s condition.

If you can afford them. Tappert says Abigail suffered from self-injurious behavior, meaning that she would hit herself, and sometimes others, often giving herself bruises around her forehead and hips. Because of the possible injuries, her daughter could not safely be left alone. She would have a meltdown when her mother would leave the room, and she would often throw a tantrum when she was interrupted while playing with her animal toys.

“We would walk on egg shells,” Tappert says of those days, the low points. “I’d dehydrate myself, because I couldn’t go to the restroom … I couldn’t get the mail from the damn mailbox.”

She was getting only three or four hours of sleep, because her daughter constantly woke up in the middle of the night. On top of being sleepdeprived, demands during the day included shopping for her daughter’s special diet, research on the disorder, doctor appointment schedules and advocacy efforts. She also spent a lot of time with her daughter, helping build coping skills for overcoming small challenges and making accommodations when challenges were too steep.

“I used to work an 80-hour-a-week job,” Tappert says. “This is harder.”

Ask her about the high point, and you can hear her smile over the phone. “I took her to the library yesterday,” Tappert says of her daughter, who is now 7 and likes to go swimming. “She used to refuse to leave the house. … I can walk away from her and her brother playing, and it’s safe. I can go make lunch.

“There is hope, and we’re an example of that,” she continues. “We were in a dark place.”

Legislative effort

Abigail got better because Tappert invested a lot of her own time and a lot of money in a variety of treatments. She estimates that the family was spending almost $100,000 a year on treatments, which range from special diets to applied behavior analysis (ABA), a treatment that has proven effective, especially in young children.

But most people can’t afford that, and insurance companies often don’t cover the treatments, which is why Tappert helped spearhead a legislative effort in 2009 that resulted in the passage of SB 244, also known as “Health Insurance Mandated Autism Treatment,” or HIMAT.

Thanks to that bill, private group health insurance companies subject to Colorado law will have to start covering seven types of autism treatments for children under 18 years old, starting with policies that are issued or renewed after July 1 of this year. The covered treatments include ABA, in addition to evaluation and assessment; occupational, speech and physical therapy; psychological care, including family counseling; pharmacy care; and psychiatric care.

“It was a big effort by a number of people,” Tappert says. “It was nice to see people come together and give their time, which is stretched thin already.”

Tappert says the new law is an improvement, but more is needed. She points to support and resources for families as an area that sorely needs more funding and attention.

“People can get through it, and kids can make progress, but families need more support,” she says, adding that if she just had a bit of assistance from a nonprofit or another charitable organization with things like running basic errands, it would have made a huge difference.

And it’s not just support for parents and their marriage, but siblings as well. Tappert says Abigail will likely outlive her parents, and her 3-year-old brother will likely have to watch out for her when she is an adult.

“He’s going to have an additional job, and that’s hard, and that’s not fair, but that’s where we are,” Tappert says.

More support needed

Local organizations like Imagine! provide a wealth of resources and support to those with developmental disabilities and their families, and parents of children with autism spoke highly of them.

But Megan Richardson of Longmont, whose son Adam was 2 years old when he was diagnosed with autism, says more support is needed, especially in the early stages. She says she was on her own from the start, from the time her son’s slow development was brushed off by pediatricians to the time a doctor at The Children’s Hospital told her it was autism on her way out the examination room door, hurrying to her next appointment.

Richardson says she feels fortunate to be wealthy enough to be able to afford the different treatments she discovered in her research and to have an insurance company in Florida that is covering many of those expenses, albeit belatedly and with constant roadblocks.

“We make a good living. We’re lucky,” she says, adding that if she won a million bucks she would give it to a poor family that is dealing with autism. “It’s a very expensive crapshoot.”

Richardson says the new Colorado law is good news because it covers ABA, a treatment that insurance companies have deemed “experimental and unproven,” an assessment she calls “complete bullshit.”

She suspected something was awry when Adam was 15 months old and wasn’t pointing at things, wasn’t making eye contact.

“There was just something missing,” Richardson says.

Now, he has made so many strides that to the untrained eye, you would never guess that he has autism, she says. It was due to the treatment and her constant efforts to engage him, like making him say “ma” before she would turn the pages of a book.

“The first time he pointed at something, I couldn’t contain it,” Richardson says. “The laundry doesn’t get done, the dishes don’t get washed, but I have a kid who looks at me.”

She acknowledges that she got depressed and lonely, but can’t imagine taking the step that Rochester is accused of taking, especially if the reports that Rochester worked with families struggling with autism are true. If those reports are true, she should have known that you can’t diagnose autism at six months, Richardson says. Even if it was autism, she points out that the child could have had a mild case that was largely treatable.

The disability is now referred to as “autism spectrum disorders,” because it occurs across a broad spectrum, ranging from minor to severe, from simple restlessness to what one parent described as wiping fecal matter on the walls.

“What if I said that if my kid’s going to have cancer, I’m going to snuff him out?” she asks. “We’ve all gone through the ‘why us,’ ‘why me,’ but they’re your kids.”

Richardson belongs to a local support group for parents of children with autism, and a few of the mothers get together at least once a month “to have a few drinks, laugh at what the kids did, and cry, if you need to.”

Aidan

Another member of that support group, Shari Watson, says she started getting mad when she read reports that Rochester was worried that she and her husband wouldn’t have fun anymore if they had a child with autism. Like Richardson, Watson agrees that having children is a gamble, and you never know what you’re going to get.

“You can’t give them back, but you can give them away,” she says.

Watson’s son Aidan, who is 11 years old, was diagnosed with a type of autism spectrum disorder called Asperger syndrome. Aidan is intelligent, bright and inquisitive. But emotionally he’s about half his age, she says.

“At age 11 and five feet tall, he can still fall on the floor and scream in a public place,” Watson says.

Aidan attends a special school in Englewood where there are three other students and three teachers. Watson gets daily written reports on how he is doing, and she says it is not unusual to see comments like “left class without permission and didn’t tell staff where he was going” or “locked staff out of the kitchen and yelled and screamed.”

“For us a good day is when he didn’t hurt anybody,” she says. “We worry about what’s going to happen when he’s an adult.”

Still, during a photo session at the Boulder Public Library, Aidan is perfectly well-behaved, explaining why he prefers the simplicity of his cassette-tape player to his iPod, asking questions about the photographer’s camera, suggesting places to take photos and striking new poses with his mother.

Watson says that Aidan’s inquisitiveness has rubbed off on her, and that she has learned an immense amount about a variety of topics simply because of his curiosity.

“You can’t take a walk without him turning over every rock he sees,” she explains. “I don’t believe that autism is the worst thing that can happen to you.”

As for insurance, Watson says her previous carrier wouldn’t cover treatments, contrary to its own rules, so she appealed, and the state’s division of insurance has fined the company twice as a result.

“Most people don’t have time to do that,” she says. “Most don’t understand the policies because of how they are written.”

Now, under Blue Cross, Aidan’s autism treatment is covered, but it is a pre-existing condition.

“So we pay twice as much for his insurance, even though he hasn’t gotten any treatment from them,” Watson says.

Environment or genetics?

Theresa Wrangham, a co-founder of the Autism Society of Boulder County, says she was able to fund treatments for her 19-year-old autistic daughter in part because her husband’s job pays well.

The downside is that he works in Alaska as a senior software analyst for the Trans-Alaska Pipeline.

Asked about the baby’s death in Superior, Wrangham says that if Rochester was suffering from postpartum depression, that could have been a contributing factor. But she also acknowledges that there have been cases of parents who have taken their children’s lives and their own after hearing about their child’s diagnosis.

“It’s tragic, because it could mean that this parent had no support and didn’t know where to go for support,” she says. “This is a symptom of a lack of support for this growing population.”

When her daughter Rachel was diagnosed at age 6, Wrangham got the distinct impression that she had “missed the boat” because her daughter had not been diagnosed earlier. Wrangham was told that her daughter would probably never read, have friends, go to college or get a job. Her daughter has done all of those things.

“It’s very crushing as a parent to get that listed off,” she says. “Nobody really knows what our kids are capable of.”

She calls for more federal and state money to make sure things like special education are fully funded and not approved as “unfunded mandates,” as has been the case with the Individuals with Disabilities Education Act (IDEA).

“We’re going to have to put a higher priority on this population, and it’s not just autism, it’s all developmental disabilities,” Wrangham says. “I can’t believe that someone would want a child who has a lower capacity to end up homeless on the street. I refuse to believe that.”

She says autism spectrum disorders are the fastest-growing developmental disability in the nation, now striking about 1 percent of the population, and that can’t be attributed entirely to greater awareness, broadening the term to include a “spectrum” of disorders or improved diagnosis. She believes that autism is not just caused by genetics, but increasingly by external, environmental factors such as vaccines, pesticides, mercury from coal-fired power plants and phthalates in plastic. Wrangham has given public comment about her concerns in Washington, D.C., to a National Institutes of Health committee.

She points to a 2009 study by University of California at Davis Professor Irva Hertz-Picciotto as evidence that factors such as enhanced awareness, the expanded definition and better diagnostics only account for about 30 percent of the increase in autism seen in recent decades.

“So that means the other 70 percent is not genetic, it’s environmental,” Wrangham says.

Building awareness

Linda Baran, a Boulder Community Hospital psychologist at the Mapleton Center who specializes in autism, notes that there has been a 200 percent increase in autism cases over the past 30 years, and she agrees that the increase is due to multiple factors.

“It looks like it’s more than just genetics, environment or diet,” she says. “It’s probably a combination of all of them.”

Baran also agrees that autism can take a severe toll on families, in part because parents begin to feel isolated. They can’t go to the store. They don’t get invited to kids’ birthday parties. They can’t attend a barbecue or a picnic because of their child’s behavior.

“Life almost becomes therapy,” she says.

“Instead of baseball games or piano lessons, for awhile they’re just taking their kids to therapy.”

She adds that, the next time you see a child’s meltdown in a grocery store, think twice before judging.

“Not every child misbehaving in the store is doing it because of parenting problems,” Baran says. “We all do it. You’re in there, trying to shop, and you say, ‘I wish they’d rein their child in.’ And really, they need empathy, not judgment.”

Sue Thomas, who co-founded the local autism society with Wrangham in 2001 and has a 19-year-old son with autism, says she was “sick to my stomach” when she heard about the accusation against Rochester.

“If she cried out for help, nobody heard it,” Thomas says. “Maybe she never saw any of our population that succeeded. It’s not a dead-end road. They’re healthy people. They live long lives.

“It’s not the end of the world,” she continues.

“Yes, it changes your life. I think it’s changed me for the better. I’m more patient, and I appreciate more things than the parent of a typical child.”

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Thank you for this article.  I know Stephanie well and it breaks my heart what has transpired.  She had absolutely no right to take her son’s life.  She cut a precious life short and has left both of their families in a tremendous amount of pain.  The Stephanie I knew loved her son and was far from someone who was just all about “fun” and not facing hardships in life head on.  The only thing that remotely makes sense is that she was very sick. 

 

Each account here unfortunately highlights the depths of the emotional and financial strain of dealing with a child with autism.  I hope that through this tragedy awareness is raised for both post partum depression and autism.

 

REPLY TO THIS COMMENT

The hopelessness, isolation and suffering that autism generates for years is enough to drive any parent into a deep depression.  I can't tell you how many inconsiderate people decided our child was a "brat", most medical professionals are incompetent to guide parents through the "Colorado maze of confusion of autism," and how terribly inadequate our school districts choose to be...  We stayed home for years and almost divorced at one point, as most couples with this challenge do.  We're now facing an uncertain future with our son, but are so very thankful and honored to be raising our wonderful boy who does not have a box to think in--it's a wonderful thing!  Advocacy is key for families like us, and it would help very much if the general public were on our team as well.  Thank you, thank you for covering this story!

 

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As a parent of a child on the spectrum it is clear to me a) the parents quoted above have A LOT of ego involved in their children's therapies, and much more importantly b) Stephanie Rochester was sick. Her killing her son had nothing to do with whether he had autism, but because she had severe mental illness. Really, was an editorial like this written about people who have "devil children" after Andrea Yates killed her children? Of course not! But because this poor woman was seriously ill AND her illness grabbed ahold of "autism" cues our society and the ASD moms get up in arms. Focus on the big picture, folks: we need to address mental illness in new mothers AND, of course, our society needs to catch up, fast, with awareness / funding / accessibility.

 

hear, hear "Anonoymous" ! Not one single month in my 11 year-old's life has passed that I haven't considered the ethics of allowing him to live. This is partially because I have my own mental health issues (and all the SHAME of reaching out when one has feelings that Stephanie acted on) and partially because, like my son with Autism, I am very logical and pragmatic and I don't see society making a place for all these "kids" on the Autistic Spectrum (a junk drawer dx if there ever was one) as they become Adults With Autism. Our low income family cannot provide necessary therapies for my son OR for us, his parents, both with multiple diagnosis of mental illness. Instead, we hide and get by, hide and get by.... my son's Actual Prognosis was summed up by a particularly tactless (but honest) employee of Imagine! who told us that he would more than likely end up on the street, going in and out of the revolving door of the prison system. I love my son- why on earth would I want to put him through that, much less me or my husband? Trust me, the decision for keeping us all alive is monthly at best.

 

I don't think the point was to detract from a needed conversation about mental illness in new mothers. PPD needs more attention and understanding (I myself went undiagnosed and really really needed help). The mental and emotional capacity of mothers and fathers caring for children with severe needs, whether new parents or more experienced, also needs to be addressed. It's hard -- and I mean hard -- to raise a child with autism -- sometimes. And sometimes it a pure joy and love that can not be described either. I understand the person who replied, I do, but please please find some hope and good to get you through the hardest days. I hope and pray for you and your family that every month you will decide life is worth living -- that you can have a smile, a moment of love and appreciation that can outweigh the difficulties. Please reach out to Imagine! and ask for some counseling -- there has to be a way, and please do not feel shame -- feel pride that you've struggled and still survived -- you must be a strong person to have come this far. Please reach out for help and let the person at Imagine! know how you feel.

 

I am writing again. Please call the Autism Society of Colorado on Monday -- they can arrange for free childcare for your child and a free counseling session for you and your husband, and can also help you try to access services on an ongoing basis. 720 214 0794 x0 I do not mean to shame you and I am certainly not judging you -- I'm trying to encourage you to talk with someone and show you that someone, even a stranger, can care.

 

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LOL...  Do you REALLY think there is free childcare for kids on the spectrum through the Autism Society?  You are seriously misled.  There's almost NO childcare, let alone FREE childcare for kids on the spectrum.  Maybe once.  But not on the ongoing basis these families need for a date night or a break. No breaks for parents, folks.  And there is no therapy for parents through Imagine! or anywhere...  Nobody deals with the traumatized siblings, either.  My spouse works for Imagine! and we took part in the ONLY programming in the state, the 3-year ASD program, and it was nice for 3 years.  If these kids have anything more than a 70 IQ (most do), Colorado has decided that the national definition for "developmentally disabled" doesn't matter to them. That's right.  No services for kids with an IQ over 70, regardless of actual functioning. Why??  Because our taxpayers vote over and over against caring for the most vulnerable people in our state...  These kids are on decades-long waiting lists, cannot get services through folks like Imagine! because our state weeds them out due to low funding.  Even the new Autism waiver is being limited in insane ways (like your child has to be on a buttload of medication)to the point that kids who need it aren't "qualifying" for the silly waiver.  And don't go looking to mental health, because they are not qualified, and shouldn't even be able to bill for services to an autistic child (because it's a developmental disability, not psychiatric-- they can't really make up their minds, see).  If your child needs to be hospitalized for behaviors that are coming up because of lack of speech or OT to address the behaviors, then step in line for 1 of the 4 (YES, ONLY 4) beds that Children's has for kids on the autism spectrum. And those are the ONLY 4 beds in the state.  

As for the woman who killed her child, there HAD to be something seriously wrong...  But I've already spewed about the inadequacy of most primary care physicians-- her OB should have seen signs, too. .  I wonder if she was on Kaiser... 

So much misinformation, so little energy to address them...

 

THANK YOU Tami... geez, finally, someone's who in touch with the reality of having a kid on the spectrum without the income or resources to turn it into "a gift from God" Sorry, but the Magical Thinking of people who earn enough money to HAVE insurance, therapies, etc. and.or have kids low enough on the spectrum to get those services provided (my son's IQ is above 70 but he definitely NOT "functional") really pisses me off! I don't see my kid's diagnosis of Autism as "inspirational" and Imagine! doesn't have JACK for us. Yes, we've checked. Yes, we've DOUBLE-checked. Yes, we've contacted EVERY resource you can list off- what am I, a slacker? No, I'm a realist. My son requires so much of my energy and time and HONEST energy- there's no phoning it in with this one! - that to follow yet another goose chase of "help" would probably drive me over the edge faster than the reality of slugging it out every day. I do understand that when folks like those above are offering resources, they're coming from a place of good intentions. And, your good intentions do do a thing for me. The reality remains that I am a strongly ethical person and advocate for the quality of life. I don't believe in the sanctity of life just for life's sake. I know firsthand that there are MANY things worse than death. To blame Stephanie for making her choice is to completely ignore the reality that there are some very GOOD ETHICAL and yes, LOVING reasons to do what she did. Do I know if her intentions were motivated from love? No. Sounds like she (like many of us that AFRAID to speak out because we'll be put either in the Crazy Box or the Evil Box) needed and asked for support that she DIDN'T get. Same on Stephanie? No way! Shame on the system, which includes all of YOU who are LUCKY and BLESSED enough to earn enough $$ to pay taxes. Shame on all of those who would DARE point a finger at her. No, Autism is NOT a gift from anyone and I'm not inspired. I'm enraged.

 

REPLY TO THIS COMMENT

My wonderful son David was diagnost with Autism in November 2008 he was 2. With the wonderful diagnosis of Autism we were able to receive Speech and Occupation therapy services through Beth Ingram and Also Easter Seals in Florida. My son has came along way from the kid he was without these services. I can't believe some people on here see Autism as a bad thing. Your child was a gift from GOD and if he gave you that child with Autism it is beacause he thought you could handle it. I love my son and sometimes get sad because he is on the lower scale of the spectrum. But I am never sad for me only him. But my son is perfect to me and my husband. We would not trade him for a ""normal kid"" ever.

 

Ginger- I'm *very* glad for you that your son has been able to get services and it sounds like your faith is a real comfort on those hard days. Keep in mind that your son is still young enough to get a lot more resources. I was singing a different tune before my son out-grew "preventative measures" and before his hormones went wonky. Good luck maintaining your positive attitude and I hope for both you and your son's sake that you both continue to have the support needed to lead a life that includes hope for your son's future.

 

 
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