In the eighteen years that my daughter and I have lived with her autism, I’ve heard all kinds of advice from people about what she needs, how to help her and even, at times, how to “cure” her.
I like to believe that much of this advice comes from a place of good intentions. Of course, we know which road is paved with those.
From the experts
Unfortunately, some “advice” is offered by folks who perhaps aren’t fully qualified to give it, but believe that they are. There are only a few truly hurtful moments I can look back on in these 18 years, and they had this detrimental impact because they came from people in authority:
- The pediatricians (there were three different ones as we moved between cities in those early months) who told me not to be concerned about her lack of speech and increasingly odd behaviors until she turned two. Age two was a magical threshold of some kind in their minds, based no doubt on standard guidelines at that time. But these guidelines had nothing to do with our reality, and her diagnoses were sharply delayed because I listened for too long.
- The elementary school principal who told me how sad it made her to watch my daughter unable to make friends on the playground, and that surely if I moved her to a different program in a different school “with people like her” she would be happier and more socially integrated. Since by “people like her” this woman meant people with autism, she clearly had no idea what she was talking about.
For many years, in school and private therapies, I was given advice on how to improve my daughter’s social and communication skills. One recurring example had to do with eye contact, and everyone’s seeming desire for her to make it. Some expressed this as a professional recommendation – “people won’t know she’s trying to communicate if she doesn’t make eye contact” – and for others it felt more personal, such as the school SLP who informed me that her job only began when my daughter was willing to “meet her halfway” by making eye contact in therapy sessions.
I humphed inside at this. As I watched my sweet girl struggling to connect with the world, and comply with the many demands it was making on her overloaded senses, I was pretty convinced that eye contact under these conditions felt invasive and even painful to her. I decided it was up to the professionals to make her want to look them in the eye, and I started saying so, repeatedly. She ultimately started initiating eye contact once she began to see how communication served her, when it became something she was choosing to enter into. These days she’ll bring her face right up close, eye to eye, with a big grin that she’s happy to see me, and I can hardly remember what it was like when she wouldn’t.
From my peers
In the early years, much of the advice I received was from other parents – at informational meetings, in clinic waiting rooms, at support groups, at school events, even sometimes a parent who just recognized in a grocery store or restaurant that my kid was a little different, and chose to connect. With advice.
Those parents whose kids shared my daughter’s diagnosis sometimes tackled me with an intensity I think only we can truly understand, in the desire to share some bit of hope that was helping them through the present fear and profoundly uncertain future that autism promises. Diets, of course. But also copper jewelry and magnetic mattresses, weighted vests and blankets, sound-based brain-rebalancing therapies (particularly useless to us as my daughter is also deaf), craniosacral therapy, and tables spinning under special light displays (which if memory serves also required traveling to Utah where the only practitioner was located).
It’s easy for me now to dismiss the “crazier” (or shall we say less evidence-based) advice. I don’t mean to be unkind by doing so. But back then, as a single parent of two, with limited resources and a desperate need to do everything in my power to save my daughter from this truly awful condition – every suggestion I didn’t feel I could try left me guilt-ridden and terrified that I was neglecting to do the One Thing that would Cure Her. It took me many years to find my bearings in this landscape, and start to feel confident that my special needs parenting choices were up to snuff.
And of course, other bits of advice are what helped me get there. Often, suggestions from fellow parents were absolutely helpful, particularly recommendations of specific local therapists who knew how to work well with “our kids” and whose names would come up over and over, proof to me of their genuine impact. And most especially the realistic advice from those ahead of me on the path, that “it’s a marathon not a sprint” and real progress comes slowly and with intense hard work.
On this topic, there is one piece of advice that I received from another parent that really sticks with me. I don’t recall her name or the setting, but I do remember discussing the towering expense of the recommended course of ABA therapy – which back then was not yet covered by any insurance plans – and that she took my hand and said to me, “don’t sacrifice your family’s entire future to your daughter’s needs”. She described how her family’s entire savings, retirement included, had gone into treatments for her son and that whatever small progress he might have achieved this way, it hadn’t been enough. I listened to her, and spent a limited amount on a limited program that summer for my daughter. Today I’m a homeowner with a secure place for my family to live because I took her advice. And I often still think of her message, whether it comes to allocating money or other limited resources – emotional energy, time, physical stamina – and apply it to the decisions I’m making for my family.
Instead of advice
Advice can be great – informed advice, offered with humility and an openness to discussion about whether or how it might work for the advisee. There are also other ways to show caring and support for people who are experiencing challenges.
Many times over the past 18 years, I have been approached by strangers – the bakery clerk at our local QFC where my daughter would ogle pastries every week, the saleswoman at Ross where she likes to play visual games with the mirrors at the end of every clothing rack, fellow patrons at the little teriyaki place where I brought her for dinner last month… – who simply said something positive to me. “You’re doing a great job.” “She looks so happy.” “You can see she is loved.”
The memories of those moments stay with me, year after year. They give me strength and encouragement when I need it most, and often that’s worth more than any piece of advice.
What is your experience in getting advice on autism? Share the high (and low) lights with us!