Twelve years ago, I gave birth to my youngest child, Richard. He was a beautiful, bright-eyed baby who smiled and cooed at everyone he met. Anywhere we went, people would come up to us to remark how handsome he was with his mischievous smile. Richard was right on track developmentally. Early photos and videos show him smiling for the camera, playing with the dog and uttering two word sentences. Somewhere after his first birthday, though, he slowly began to change. He stopped responding to his name. He became fixated lining up his toy cars. Most noticeable of all, he lost his words and his eyes took on a dreamy look. He became a different child.
I sensed something was just not right. Whenever I brought it up with others, I was told not to worry because boys are often delayed in their speech development and he would catch up. For as long as I could, I listened to their opinions, in the hope that they were right and I was wrong. But as the months passed, Richard’s development seemed to further lag. Indeed, something was wrong, it was autism.
I remember the day my husband and I received the diagnosis. I wanted to punch the doctor so badly to stop her from talking. It was surreal as if she was talking about a different child, not mine. But deep down inside, I knew her words were true. I was hurting so badly, confused, not knowing what to do and blaming myself for my son’s autism.
I hit the ground running, researching online every article about autism. I became oblivious to my husband and our four older children, thinking that they were old enough to understand their brother’s condition. My focus was only on Richard, on how to help him recover from his autism. I read about anecdotes on children recovering from autism through special diets and alternative treatments. At that time, our family was still living in the Philippines. There were not that many options available. Therapies were expensive and drained our financial resources. It did not stop me from pursuing alternative options in the hope that these would “cure” my son’s autism.
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 daughter asking me if his brother would ever be able to live by himself and then telling me that she could live with him. As we talked about it more, she seemed to regret that offer as she conjured up a picture of the future with his little brother and herself, as she was then, a mature child, but still, only a child. She wasn’t able to imagine him or herself 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 a 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 come 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 him. We began to focus on the positives – what he can do. And more importantly who he is – a pure-hearted, free-spirited boy who is smarter than people often give him credit for being.
I recall telling Dr. Cowan, who gave us his 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 being 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.