Final Blog in Our Series on Autism and Family Life
Years ago, a catfight broke out on a local listserv for families of children with autism. The new guard (parents new to a diagnosis) was having it out with the old guard (parents of older kids) over treatments. Criticism flew in all directions and it was getting downright ugly. Back then I was more a listserv-lurker than a writer, but my concern about this divisiveness propelled me to post a reminder that we were more alike than we were different and that we all wanted the same thing for our kids. I pointed out that autism is hard and we need all the support we can get so let’s be kind to each other. It was a long post and I had regrets as soon as I hit the send button. It was well-received though, and many said that they planned to use it as a primer for family and friends to help understand life with autism.
Years later, soon after I started with Seattle Children’s, I was asked to co-present with a psychologist colleague to a group of psychology/psychiatry residents on autism. She was to cover evaluating and diagnosing autism and mine was to be a parent’s perspective on autism. How on earth, I wondered, do I begin to capture life with autism? What I wanted was for the group to come spend 24 hours with my family, but that wasn’t going to happen so I decided on the next best thing. I asked friends to videotape my family from the time we got up in the morning until the time we went to bed at night . . . and the time we got up in the middle of the night! We began taping in the summer and finished up just after Christmas. With a dedicated crew and cast, “A Day in the Life with Autism” was made, 24 minutes representing 24 hours of life with autism.
I decided that the video needed an introduction. I dug up that old post, reworked it a bit, and there it was: The Impact of Autism on Families.
My initial audience was this group of residents, but I have been asked over the last five years to present to a variety of staff including pediatric dental residents, educators, therapists, camp counselors, emergency medicine, clinical research, and social work. Each time, I tailor it to that audience taking into account the specific experience families of kids on the spectrum have with staff in that department whether it be a blood draw or a dentist appointment or an emergency room visit.
As the last in this series of blogs on autism and family life, I share with you the original one written for those in the mental health field. It is offered with the hope that it might help you to explain your child and your family to your providers, maybe even your own friends and family.
I once submitted it as a perspective piece to a professional journal, but was told it was “too negative” and was asked to change it to be more positive. In all the years of presenting this, no one had told me it was too negative. Raw? Yes. Honest? Yes. I declined trying to rework it, knowing that it would be fiction, not my real life. So please keep in mind that this is one parent’s perspective, a portrayal of my life with autism, both the challenges and the blessings.
The Impact of Autism on Families- A Message to Mental Health Providers
My daughter, Carrie was a beautiful, bright-eyed baby, who was right on track developmentally. Early photos and video show her smiling for the camera, playing with her toys, engaged with those around her.
Somewhere after her first birthday though, she slowly began to change. She stopped responding to her name. Instead of playing with her toys, she became fixated on kitchen utensils, insisting on having one in each hand. Most noticeable of all, her big brown eyes took on a dreamy look, and she seemed to be fading away from us.
During these months of change, I struggled with an increasing intuitive sense that something was just not right. However, the changes were quite subtle, and when I brought them up with others, I was reassured that there was nothing to worry about.
For as long as I could, I clung to those opinions, because my heart was not able to challenge what my head was telling me was true. That there was indeed something wrong, and that it was autism.
When parents receive this diagnosis, the floor below disappears. We’re told that our child has a serious neurological disorder, with no known cause or cure, and with no sure answers as to what the future holds. We’re told there is no one protocol for treating it and are left to sort through a menu of interventions, none of which have proven effective for all kids. We’re told that early intervention is critical, but when we ask where we can find what we imagine to be a nice neat package of tailor-made services, we learn that there is no early intervention store and that therapies are often not covered by insurance. (Note: this is a changing scene with more states, including Washington, mandating coverage for autism therapies.)
Shell-shocked, and with a dire sense of urgency for fear of a window closing, we go online and read all we can about autism. We’re overwhelmed with the choice of interventions and confusing, often conflicting, results of efficacy. ABA, RDI, DIR, PRT, special diets, medication, supplements, chelation.
When we got our diagnosis thirteen years ago, secretin, ABA, and the diet were the treatments du jour. Should we try one thing at a time or dive in and do multiple things at once, we wondered, worried how we’d know what was causing what. Back then, a staggering 40 hours a week of ABA was suggested. While this seemed crazy to us for a two year old, we were determined to do everything in our power to make autism go away.
While impatiently waiting for interventions to work, parents read almost weekly about studies that link autism to older moms, older dads, vaccinations, influenza, rainy climates, errant genes, and a host of other things that push the parent guilt button for waiting so long to have kids, for getting a flu shot when pregnant, for not getting a flu shot when pregnant, and if nothing else, for passing on predisposing DNA to our child.
While all this is going on, we have a child who needs us – kids who don’t sleep well or potty train easily, who are picky eaters, have odd, difficult, stubborn behaviors including hours-long tantrums and maddening rigidity.
Many of us have other kids who need us. Siblings who don’t understand why sister gets so much attention, why we can’t go on family vacations like other families, why people stare when we’re in public. Siblings are often confused, even afraid of what all this means. I remember early on, my son asking me if his sister would ever be able to live by herself and then telling me that she could live with him. As we talked about it more, he seemed to regret that offer as he conjured up a picture of the future with his little sister and himself, as he was then, a mature child, but still, only a child. He wasn’t able to imagine her or himself as adults.
Autism also doesn’t happen in a vacuum. Our other kids keep us busy with typical life such as homework, sports and driving. We have our own parents who are aging and need us more. We ourselves get sick. We have jobs, financial challenges, marital stress, and wounded hearts that grieve the “normal” life and dreams we thought we had.
With each new intervention, hopes are raised and often dashed as it fails to provide the results we desperately wanted. As time goes on, we get some sense of where on that spectrum our child is. We wonder endlessly why some things work so well for some kids, but not for ours. It is easy for parents to get the message that they aren’t doing a good enough job. After religiously implementing the diet for fourteen months and seeing no improvement, I was told that I had to be doing something wrong. I just needed to check labels more closely. After five years of ABA, other parents told us we had wasted precious time when we should have begun with a biomedical approach.
The desire to help our kids is so intense that we vow to try anything and everything as long as it does no harm. But how do we truly know? Look how things have changed from one generation to the next. When I was a kid, babies slept on their tummies, we took little orange aspirin (when we actually had chicken pox, measles, mumps, and rubella), we had no car seats or bike helmets and thalidomide was thought to be safe. Much has changed for the better, but there is much we still don’t know. Life is full of risks and we take them every day.
Acceptance wasn’t something that arrived one day and stayed. It proved to be temporary, elusive. Because doctors are rightly hesitant to give a prognosis, it is difficult to know just what you are accepting. Only time would lead us to the place where we came to view autism as a life-changing challenge that we could handle. We never gave up hope, but we surrendered to autism and stopped trying to fix her. We began to focus on the positives – what she can do. And more importantly who she is – a pure-hearted, free-spirited girl who is smarter than people often give her credit for being.
Carrie is sixteen now and is still significantly affected. She doesn’t talk, but she most definitely communicates! She is growing and maturing – always on her own terms – to the beat of her own drum and to the tick of her own clock. She’s the sweetest, most fascinating person you’ll ever meet. And I love her with every fiber of my being.
She is following in the footsteps of her grandparents who spent their lives teaching. Many have commented on the lessons she has taught. For us, her family, we have learned the meaning of unconditional love for and from a child who has no words to say “I love you”. While we remain unsure of many things, we are certain she thrives in the love and affection in which she is surrounded. We are more patient, compassionate, open-minded, and forgiving. I’m better because of her – a better mom, a better clinician. I’ve found meaning in having a child with special needs and know exactly what my purpose on this planet is – to be the best mom I can be and to help make life easier for others.
I recall telling Dr. Cowan, who gave us her diagnosis, that it felt as if we’d been inducted into a club to which we did not want to belong. After a while I found myself feeling fortunate to be part of this club, alongside fellow parents and providers working toward making life better for our kids. There are countless people who have chosen to work with kids with special needs who help lighten the load and to them I am forever grateful.
I’m often asked what parents appreciate from providers and, in a nutshell, I’d say being treated respectfully, feeling cared about, and helped in concrete ways. It helps to hear your vote of confidence as we try new things with our very complex kids. It feels good when we’re asked, “And how are YOU doing?” after hearing about our child. It is empowering to hear you ask us what we think about a particular situation involving our child. Easy access to you is so appreciated.
The nature of your training is in dysfunction. Parents may feel some scrutiny when asked about family history and parenting practices. Give them credit for knowing their child better than anyone, and point out their strengths, things that they are doing well. With parents of older kids, it’s easier to ask them what they have not tried when it comes to treatments. With parents new to the diagnosis, be gentle – this is a whole new world for them. Parents are weary from always being in hypervigilant overdrive and we can come across as cranky – but it isn’t personal, so forgive us.
Keep in mind the many cultural and socio-economic differences that come into play with a disorder that affects families from all walks of life. In some cultures, it is considered a reflection of the family, a defect or blemish, so asking for help may not come easily. I sometimes hear parents express concern that their child won’t be a contributing member of society. In some languages, there isn’t even a word for autism. While awareness is much better today, there are still many people who have never heard of autism and explaining it to parents with limited proficiency in English can be a challenge. Much of the resources available are described in English only and many treatments are expensive, not covered by insurance, making access impossible to those who don’t have the financial means.
In my work helping families, I often hear them sigh and say to me, “You Get It!” They ask me to help providers to “get it”. While I think it’s not truly possible to do so unless you walk in these shoes, I feel compelled to try to convey as much as possible what life is like for families living with autism.
You can, however, help parents get off to a good start by shaping positive experiences and promoting self-efficacy. For me this included being treated as an intelligent, caring parent, having my concerns taken seriously, and partnering together with mutual respect. These early successes gave me the confidence and the competence to do what I needed to do, leading to less stress for me, the belief that I could handle future challenges, and ultimately, better outcomes for my child.
This is what Lynn wanted providers to know about her child with autism. If you had the chance to write a letter to your child’s providers, what would you want them to know? Stay tuned for our upcoming series. What I Want my Child’s Teacher/Therapist/Doctor to Know.
To read the rest of this series, please follow the links below: