As estimates of the number of children with autism spectrum disorders continue to soar, and our understanding of the developmental disorder slowly deepens, it may seem as though parents have more resources and support available to them than ever before. But for many caregivers, that is simply not true.
In the latest installment of his 15-chapter series "America's Most Admired Lawbreaker," which probes Johnson & Johnson's promotion of the drug Risperdal to children, journalist Steven Brill tells the story of one mother, Benita Pledger, whose 21-year-old boy, Austin, began taking the drug years earlier to help manage some of his symptoms. Instead, he developed gynecomastia, or the growing of female breasts. "Risperdal didn’t fix [his autism]," said Pledger, who had blamed herself for her son's disfigurement. "There was no fix. That's what autism is."
We reached out to the HuffPost Parents community to ask mothers and fathers of children with autism to share some of the difficulties they've faced in their pursuit of help. Their stories are proof of just how challenging it is for parents to navigate the complex world of autism spectrum disorders, as well as a reminder to other mothers and fathers facing similar situations that they are never alone.
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"It has hurt our marriage beyond belief."
I get envious of parents with 'normal' kids. We will only have my son, who got diagnosed a few months after he turned three, because I know how hard it has been for all of us -- between occupational therapy appointments and toilet training issues. Most recently, my son had a three-day hospital stay for constipation, because his sensory issues keep him from proper toilet training. And then we probably spend about six hours per week attending outside appointments, beyond what he gets in school.
It has hurt our marriage beyond belief. It has caused us to fight quite a bit, something that is very common among parents of special needs children. Initially, my husband blamed me for our son's behavior -- I was the reason he was so difficult. After the diagnosis, it lessened a little, but it still continues to this day with our toilet training failures. I love my son with everything I have ... but we are exhausted. -- Kate, 35, Illinois
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"The hardest part for me is how alone I feel as a parent."
The hardest part for me is how alone I feel as a parent -- when I'm not being accused of bad parenting due to my daughter's behavior, I'm on my own trying to figure out resources. My daughter is in mainstream pre-school and she sometimes acts aggressively towards other kids, hitting or biting them. The teachers and some other parents have accused me and my husband of not being strong enough disciplinarians with her; some parents have attempted to get my daughter kicked out by complaining to the teachers and administration. Even my own extended family has said we either don't discipline her enough or are "too soft on her" -- as if enough time outs would solve my daughter's problems. -- Anonymous, 37, California
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"Nothing about autism is easy."
Nothing about autism is easy. You can embrace it; you can find coping mechanisms and you can find small ways to make daily life a little easier. But that doesn't make autism easy. You can hold and rock and squeeze and console your child, but that doesn't change the fact that not having "apple yasawce" right now will put them in a meltdown so bad, they are writhing in pain; or the fact that the ticking clock makes it absolutely impossible for them to focus on the most mundane tasks, like eating. I'm so thankful for anything that helps, like being able to wrap my son, who was diagnosed when he was two, on my back nice and tight so he can watch this too-bright, too-loud, too-stimulating world from the safety of his momma's back.
With autism, social-emotional skills are a huge hurdle, but we are so close and in tune to each other. If he needs help sleeping, we co-sleep. I don't put him in situations that will make him frantic, even if it means we're missing a best friend's birthday. His comfort is my main priority, and I need him to be able to trust me -- always. -- Jessica, 27, New York
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"They didn't seem to understand why I wanted an official diagnosis."
My daughter will be six next month and is on the severe end of the spectrum. She is non-verbal. Getting her diagnosed was ... hard. I noticed things from the time she was born -- she would only sleep in the swing and the lights had to be on. She didn't like being held. She was independent. She didn't like new people looking at her, and started having screaming fits for no apparent reason when she was six months. At her one year check-up I talked to her doctor, who thought it was strange that I specifically brought up autism. We got her in early intervention, but they wouldn't say anything more than 'developmentally delayed.' I pushed and pushed, and they finally agreed to do official autism testing. They didn't seem to understand why I wanted an official diagnosis, and I had to explain -- "delayed" isn't specific; it's a wide range of things that get worked on in therapy, whereas autism is specific. -- Erica, 34, Michigan
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"It's so hard to search for the right help, the help that actually works."
The most difficult thing, for me, was getting all of my son's therapies set up. It's very time consuming to wait both for evaluations and openings. Jackson has apraxia of speech along with ASD, and he sees several private speech therapists, as well as the one from his school. With our first speech language pathologist, it only took about two weeks for an evaluation and we were scheduled to start therapy the next week. But with the second, it took three months to get evaluated and get a spot. It's so hard to search for the right help, the help that actually works. And staying strong for your child is a constant challenge. But being completely in love with them is not. -- Amanda, 32, Nevada
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"I cannot imagine navigating the system not knowing what to ask for."
My son was just diagnosed as having autism spectrum disorder. I have a degree in special education, and I did my student teaching with seven boys who were all on the spectrum, and were all non-verbal. Leading up to his diagnosis I thought I would be fine. (We had suspected it for about a year.) But when I heard the words "Your son fits the criteria for an autism spectrum disorder diagnosis," I felt like I had been hit by a freight train. I was not okay. And I was not okay that I wasn't okay!
I called insurance the next day to start the process of getting him ABA [applied behavior analysis], speech and OT [occupational therapy]. After I got off the phone, I thought about how I cannot imagine navigating that system not knowing what to ask for -- without knowing all the terms and who the good providers in the area are. -- Holly, 27, Washington
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"I gave up going to law school to manage our son's therapies."
My son was four when we started trying to get him evaluated for autism spectrum disorder. We saw it, his pediatrician saw it and the teachers at his preschool saw it, so we took him to the most well-known autism doctor in our area. He spent maybe 20 minutes with him, then he referred us to a psychologist who also thought it was autism. But when we went back two weeks later, he said he no longer felt comfortable with the diagnosis, because the first specialist had been unsure. We had to wait a year to get a second opinion due to insurance issues. It turns out our son is very high-functioning, so the first doctor just missed it.
Once he was diagnosed, I gave up going to law school to manage our son's therapies. He has TSS [therapeutic support services workers] come into the home twice a week for two hours, and I take him to occupational therapy once a week, which is 30 minutes away. My other two children now have speech therapy as well (but no diagnosis of anything yet) and there was just no way I could find time for school and all of their therapies and appointments. -- Eliza, 27, Pennsylvania
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