Practical Advice for Parents of an Autistic Child: An Interview with Tim Tucker
Autism can cause a wide range of symptoms, from sensory issues to communication difficulties. Kids with autism often require speech therapy to encourage vocalizations. This week we’re talking with Tim Tucker of Both Hands and a Flashlight about his advice for parents of an autistic child. Tim and his wife, Mary, have two adorable little boys. Jonas (aka J-Man) is 7 and Eli (aka Dale Jr.) is 3 ½ years old. Jonas was diagnosed with autism, and like most parents of an autistic child, Tim and Mary initially struggled to come to terms with the diagnosis. But despite the challenges, Tim advises parents to develop positive affirmations, to embrace the identity of being the parent of an autistic child. Read on to find out Jonas’ speech therapy techniques, and check out Tim’s free e-book, “I Am An Autism Parent.”
SB: You’ve just announced the release of your free e-book, “I Am an Autism Parent,” for parents new to autism. Congratulations! How would you summarize your advice for parents struggling to cope with the diagnosis?
If people don’t remember anything else, I want them to hear the words, “I know you feel terrified and lost, but you can do this.”
Nearly everybody struggles after you first receive a diagnosis for your child. Almost none of us have any sort of training for this at the beginning, so we’re terrified. We are most afraid of what we don’t yet understand, but the key part there is ‘yet’. None of us have it all figured out nor will we, but with time and experience you will feel more able to know what to do and how. You never will know everything as that is impossible, but you will become more comfortable with what you don’t know and more confident in your ability to figure things out as you go.
I gave the book the title “I Am An Autism Parent” very intentionally. To me, it’s a fundamental statement of affirmation. This is who I am, and I am claiming that identity. I am responsible for how I live my life as an autism parent, and I accept that challenge. There’s something essential to owning the challenge ahead of you. You’re like the superhero accepting who they are, the autism parent equivalent of Superman putting on the cape and tights for the first time.
But we all have to grow into that role. You have to go through a lot of self-doubt about whether you can do this, and to be honest that doubt doesn’t go away; you just manage it better. When fear and doubt start overwhelming you, the best step you can take is to reach out to other autism parents. We’ve all been through this, we know the path forward, and we want to cheer you on.
From the beginning, start building a village of people who cheer for you and your child. Anyone in your life who isn’t helping you or who you feel is judgmental of you or your child, they don’t belong in your village. Surround yourself with people who understand, who will be there for you, and who will support you. You can’t do this alone, and you don’t have to.
I’m serious when I tell parents to not dive into the first therapy that presents itself to you. There are a lot of scams and therapies out there that simply don’t work, and some are outright dangerous. It’s easy to get sucked in by all the guilt-inducing marketing. You just want to do the right thing for your child – we all do – but it’s so hard to know what that is.
Give yourself time and space to breathe and regroup, and then start making deliberate steps forward. Build your village, do your research, make the best decisions you can, show yourself a lot of grace, and believe in yourself.
Most of all, just enjoy your child and love them. Love is the best therapy of all.
SB: Autism takes an incredible financial toll, and you and Mary have had to fight for services for Jonas. Many parents are unsure of how to advocate for their children. How do you cut through all the red tape? Is Jonas getting the help he needs now?
TT: This is a tough one. We consider ourselves lucky in that we have such a wonderful school placement and that he is getting great speech and occupational therapy (OT) services there in addition to stellar teaching. They are the cornerstone we’ve built everything else around. Parents and children have the most federal protections within your school system (in the U.S. at least), so you are operating more from a position of strength there. I tell everyone from age 3 on to get as much as you reasonably can within your school placement.
Government-provided services outside of school, on the other hand, have been a mess for us, and I know this is common for nearly everybody. We have been on the wait list for CAP/Medicaid waiver-related support for forever, and it looks like we’ll be waiting for many more years. Our local services (case management and developmental therapy) provided via our county were completely cut earlier in the year because we supposedly made too much money, which is a joke. This made us sad because the DT was really making a difference.
I have lately been struggling with what advice to give other parents about this. The cold reality is that no one is coming to save us. We have to come up with creative solutions to manage both the financial challenges and our children’s needs. If that means negotiating better out-of-pocket deals with providers, hiring someone currently not affiliated with an agency or practice at a lower cost, just learning from everybody and doing as much of it as we can ourselves, or any of a variety of less traditional options, so be it.
You have to think way outside the box and take charge of things. You have to be brutally honest with yourself about what the realities are and what you can and cannot get services-wise. Then, you have to focus your energy on what you can do, and do it. It’s not fair, but it’s the reality. I’m finding that the only way is to make peace with the reality of it and then focus my energy on finding creative ways to make things work the best they can.
This is daunting and scary for all of us to face this immense hurdle, but you will find that you are capable of a whole lot more than you think you are. Face this challenge in the same way you help your child. Break the immense tasks into small, bite-sized steps, do one step, then move on to the next. You’ll find in general that the way our children learn is a great model for us as parents, too.
SB: J-Man was also diagnosed with apraxia. Are there any particular speech therapy techniques you’ve found to be helpful for his articulation or for other speech and language issues?
Apraxia is a diagnosis we don’t refer to much anymore, mostly because his speech challenges are so broad. We’ve now defined this large umbrella of challenges as “severely speech delayed” or “minimally verbal” to cover a whole range of things. His speech difficulties are such that we pretty much try everything we can think of in hopes of finding what will help him.
One of the most effective approaches we’ve tried is a really simple one. If he wants something, he has to ask for it verbally or with his device, or both. Motivators are powerful tools. Word approximations are fine. As long as he attempts the speech and makes the effort, we count it. We model the speech to help him, make clear mouth shapes, slow down our speech so he can hear all the sounds, whatever might help.
He’s like many autistic children in that he has certain preferred scripts, and these often involve the many sounds he has problems making. We use those as opportunities to practice articulation as well. These are words and sounds he wants to make, so we leverage that. He also has favorite words, so we use those to help him not just with articulation but inflection and stresses as well.
For the longest time we did a back and forth kind of speech where he would say or try to say part of a word, we’d repeat it back to him, and he would continue on with the next sound in the word or the next word. We got through entire sentences and later short paragraphs and songs that way. Sure it took a long time to get through even a few words, but this sort of verbal handholding seemed to ground him and help him feel more comfortable and confident in making sounds and words.
We have also noticed that as he has used his ‘talker’ (iPad running the Speak for Yourself app) more and more, his verbal speech has improved as well. My theory is that as he explores the word choices and hears the computer speech, he can practice in his own head and then out loud in a low-stress way. In addition, the talker obviously provides numerous options for communication with both the picture boards and the typing on the iPad’s keyboard beyond what he can currently say verbally.
To give you some idea, his verbal speech is probably that of about a 2 1/2-year-old right now, so any progress is noticeable. We’ve been thrilled that lately he has made significant progress.
Basically, you look for what your child enjoys and the areas in which your child is strongest and build from there. We push him because we want him to know that he can overcome challenges and that we believe in him, but we also want his practice to be as fun and positive as possible. We also want him to know that he doesn’t have to communicate the way everyone else does, just in the way that is best and right for him. The techniques have to match the child.
SB: J-Man uses a homemade color matching activity, which has the added benefit of working on his fine motor skills. What other at-home therapy activities have you found helpful for him?
TT: That activity is old hat to him now. He’s outgrown most everything I’ve written about on the blog in the past, but these are skills we continue to work on. His fine motor skills are rather diverse, which makes things hard to pin down. He can hold an amazing amount of objects in his hands simultaneously while still doing activities, but, for example, he has trouble holding a pencil or crayon with the appropriate grasp. Many manipulatives aren’t hard for him anymore, but newer activities that require motor planning and sequencing are. He really struggles to put together several fine motor actions in a sequence. This is primarily a matter of practice and repetition. We break down activities into their fundamental components and work through them one at a time, using a variety of visual cues and modeling it for him as needed. I wish I had a more glamorous or sexy answer, but it really is just a lot of practice.
Right now we’re doing a lot of writing and pre-writing activities like forming letters by having him write over a version of the letter already on the page done in highlighter, following lines and shapes with the pen, coloring within a defined space, etc. His handwriting has really taken off in recent weeks. We’ve also worked a lot on typing and using grids on his talker with small squares to inch toward improving his ability to communicate with the iPad. His dexterity there has greatly improved. The big bonus here is that the combination of his reading and spelling skills, which he’s had for a long time, are now translating into writing and typing activities now that he’s building up the dexterity skills necessary to implement those.
We’ve also been working lately on basic addition, money, telling time, matching objects to their functions, more/less and most/least, adjectives, etc., a mixture of academic and what one might call ‘practical life skills’. This is also just continual practice. Many activities for any of these can be found straight off the Internet.
He is the sort of kid who often overcomes challenges in what seems all of the sudden, though it’s not. He practices the various skills necessary to do something, like writing a word, for months and months. Then, seemingly all of the sudden, everything clicks into place and he jumps to near mastery of that skill. It seems like an overnight success, but as with most overnight successes, they are months and years in the making. All of that hard work builds up inside him until all the pieces fall into place.
The main thing is to identify the need or challenge as specifically as you can (e.g., holding a pencil correctly, how to practice letters, how to sequence the manipulation of a particular object) and just look online for examples and tasks. There are zillions of ideas online, most of which you can do with materials you already have around your house. Rarely do you need to go buy special equipment. Then it’s just practice, practice, practice.
SB: Autism affects about one in every 88 children, according to the CDC. Despite the growing prevalence of ASD, do you find that people are unsure of how to act around an autistic child? How would you address the stereotypes?
TT: Yeah, people bring all sorts of assumptions to their interactions with autistic children or adults and their parents. There is such diversity among autistic persons, but people still formulate some image in their minds of the ‘average’ autistic person. While they might mean well, all these assumptions and whatever results from them often miss the mark. I guess it’s often just easier to try to classify people than to meet people as unique individuals.
We tend to overcomplicate all this. I usually just tell people to be kind and respectful toward others and stop assuming you know what’s going on in someone else’s life. That solves most of the problems right there. If you see a child having a hard time in the store, for example, immediately stop any thought that pops into your head that the parents spoil the child or that child is a brat. Don’t assume anything. Instead, be kind. Offer help. Be a non-judgmental, calm, caring presence. If you can’t do that, just don’t say or do anything. That would solve so many issues right there.
When it comes to family and friends, just ask us. Follow our lead. Respect our children and their needs. Treat them with integrity. Be open to learn. I simply suggest people follow our lead and ask questions if they have them. We are happy to answer questions and help others learn more.
If we would all just try to get to know each other as unique individuals, not assume things, treat everyone with integrity, and act with kindness that would make things so much better for everyone.
I wrote some “Be Aware” posts for Autism Awareness Day a couple of years ago. There’s a lot of simple, straightforward advice for friends, family, and the general public in there.
For friends and families: http://www.bothhandsandaflashlight.com/2010/04/02/be-aware-for-families-and-friends/
SB: Thanks so much, Tim, for sharing your advice and speech therapy techniques with us! Be sure to check out Tim’s blog at Both Hands and a Flashlight.