“Dusty skies/I can’t see nothin’ in sight” are the lyrics to what my son Danny calls a “cowboy song” — “Dusty Skies,” by Bob Wills and His Texas Playboys. It’s the first tune on a CD of classic country & western music that he listens to first thing every morning. Transitions are difficult for Danny, who turns 18 next week and was diagnosed with autism at the age of 3. Country songs ease him into the day.
My good old Dan has led me much farther afield than I ever imagined he would when he was born, and he has always brought me to people who can guide us right — eventually. There have been many wonderful therapists and teachers who have helped him, and he has made slow but steady progress. While at one time, he spoke few coherent words, had tantrums with dizzying frequency and seemed as if he would never be toilet-trained, now he is able to speak clearly (although he will often talk about friends from preschool as if he saw them yesterday), read and write, play piano and compete in the Special Olympics (he won a gold medal in swimming last year). He is so affectionate and warm that many of his therapists have kept in touch with us for over a decade after they stopped working with him.
His level of functioning today is a triumph in many ways. But in spite of all the therapists’ work and Danny’s efforts, only a mother as crazy as I am would think he could ever live independently. He is still too impulsive to cross the street alone, although we have worked on this with him for years. Many other skills necessary to living life as an adult still elude him. On his birthday, his father and I will become his legal guardians; the paperwork is already filed. But part of me still hopes and believes one day he will be free to make his own choices and live his own life. Figuring out how to make that happen is the issue.
Various professionals promised when he was a toddler that if I put him in their program and followed their advice religiously, he would be mainstreamed within three years. That was more than a decade ago. “I thought it would soon be clear and fair,” as Wills sings. But it’s been a much rockier road than I ever thought when Danny was first diagnosed. My marriage disintegrated, and dealing with all the changes that brought was a huge setback for Danny, who understood less and took it even harder than most typically developing children would. Danny continues to have just enough tantrums to ensure that no high school will consider mainstreaming him. And in three years, the education system is finished with him where we live. I’m trying hard to figure out his next step.
Many parents around the world are undertaking a similar journey. When I published my novel, If I Could Tell You, about four mothers in New York whose children had just been diagnosed with autism, I received emails from families on every continent. They were all working as hard as they could to help their children, and many observed little progress.
There are days when I find myself humming along to the lines, “Blue skies have failed/So we’re on our last trail/Underneath these dusty skies.”
But we’re not on our last trail. And as I plan a day of train rides followed by a birthday cake (Danny loves trains), here are a few things the last decade and a half of being the mother of a child with autism has taught me:
1. Once your child is diagnosed with autism, you find out who your real friends are, and who the staunchest allies in your family are. That can be tough, but in the end, who needs people who don’t accept you and your child?
2. Autism is unpredictable. Danny still surprises me, on an almost daily basis.
3. If you have other children who are not on the spectrum, you will have to fight to give them the attention they need. It’s easy to push aside the typically developing kids, but they are in an even tougher spot than we are: At least we chose to be parents, but they didn’t choose anything.
4. Almost everything about autism is difficult, but it isn’t all bad. For example, it’s tough and sometimes impossible for people on the spectrum to lie. Try finding a politician with that quality.
5. There’s never been a better time to have a child diagnosed with autism.As the numbers go up, awareness is increasing, so you’re more likely than ever to find people who understand what you’re going through.
6. Autism does not mean your child does not have his or her own personality. As Dr. Stephen Shore, a musician and author who was diagnosed with Asperger syndrome as a child, wrote, “If you’ve met one person with autism, you’ve met one person with autism.”
7. Teachers who work with children with autism are underpaid and overworked. If you appreciate their work, tell them as often as you can. They’ve earned our gratitude.
8. It helps to be upfront about your child’s autism when dealing with friends, neighbors and (especially) co-workers. Let them know why you need a flexible schedule. My editors and co-workers have been unfailingly great about my need to take my son to therapy sessions. If you give people the chance, they are often very helpful.
9. Give yourself a break, because no one else will. Although parents are no longer officially blamed for their children’s autism, as they were during the“Refrigerator Mother” theory era, people are often critical of our parenting. Some days, everyone else seems to know exactly what I should do with Danny, and exactly how I should do it. But then I remember: None of these people could handle him for even an hour.
10. When you hear about typically developing kids reaching milestones that it seems unlikely your child will ever achieve, it will hurt. But bite your tongue if you can and don’t scream something like, “Who cares if your kid didn’t get into the college of her choice? If only my kid could… “
11. Find the right teacher or therapist and your child will flourish. I’ve found that the therapist is more important than the type of therapy. It is imperative that the therapist establish a close, warm relationship with the child. Sometimes the people who work best with Danny are not particularly at ease with me, but they shine with him, and that’s what is important. Dr. Temple Grandin, the engineer and author who has written eloquently of her autism, said, “I cannot emphasize enough the importance of a good teacher.”
12. Try to see the world from your child’s point of view. This is consistently the most helpful strategy for trying to help Danny.
13. If you want to change your child, first you have to change yourself. In order to help Danny, I’ve had to become more flexible, focused and understanding.
14. Practice “positive talking” — these kids hear the word “no” all the time.Adults have a hard time accepting criticism even at a once-a-year job review, but kids with autism are constantly being told what they’re doing is wrong. Make corrections as constructively and positively as you can.
15. Trying to help our children communicate and become more independent doesn’t mean we don’t love them for who they are. People on the higher-functioning end of the autism spectrum can make their own choices and live independently. Lower-functioning people with autism need more help, but it doesn’t mean we love them any less. Autism isn’t eccentricity or a lifestyle choice, and low-functioning people with autism are very vulnerable to all kinds of abuse. As parents, it’s our responsibility to help them learn as much as possible.
16. Every life has value. I believe my son is as important to the world as any of those people who give him dirty looks when he jumps up and down in a store.
17. You have to dream big for your child — if you don’t, who will?
18. Dallas Buyers Club, the Oscar-winning film about AIDS activism, should become a model for autism parents. AIDS activist Ron Woodroofrefused to accept that there was no treatment for HIV when he tested positive for the virus in 1985, and did not stop until he found a medication cocktail that worked. Twenty years ago, autism was diagnosed once in 2,500 children, and now the CDC puts the figure at one in 68. That jump is a public health crisis and we have to sound the alarm bells and push the medical establishment to treat it as such, just as AIDS activists such as Woodroof did.
On Danny’s birthday, I may find myself crying, as I often do, when Bob Wills sings the last lines of “Dusty Skies,” “These ain’t tears in my eyes/Just sand from these dusty skies.”
But then Danny sits up, gives me a killer smile and asks about his beloved cat who died a decade ago — his way of saying, “Good morning.” As he gets dressed, he sings along to the next songs on the CD, “Back in the Saddle Again” and, even more on target, “Don’t Fence Me In.”