Keeping It Personal
Tobi Burch Rates, executive director of the Autism Society of Oregon (ASO), knows about life with autism – both of her sons are autistic. She has several family members with autistic children. Tobi draws from a background in family law – as well as the day-to-day experiences of her family – to advocate for families with autistic children and to offer resources and support.
Tobi’s eyes shine with pride when she describes her sons – 14-year-old Willie (who is mildly impacted by autism), and 10-year-old Jacob (who is more severely impacted). She talks about how Willie is smart and creative, and how Jakey is open-hearted and loving. The boys were both diagnosed with autism in Washington, DC, before Tobi’s family moved to Oregon six years ago.
After relocating, Tobi volunteered with several groups, including Portland Asperger’s Network, and Autism Society of Oregon, as a way of building a network of support. She had been on the board of ASO for two years when the former executive director left, so she took the helm.
What would you say is one of the most important lessons you have learned along the way?
The main thing I try to get across is “when you’ve met one autistic person, you’ve met one autistic person.” Everyone on the autism spectrum is unique and different. It concerns me when people say, “I know this person who is autistic, so I get it.” You may know all about that person, but you will probably meet another person on the autism spectrum who is going to manifest completely differently. What I tell parents is, “You don’t need to learn all about autism; you need to learn all about your kid.” Whether your kid is 2, or 22 or 32. It really is that individualized.
I often use my own kids as an example. They are very different, almost opposite!
My older son Willie is fully verbal and can go on about his areas of particular interest at length! He is at or above grade level in most of his subjects. He does have some fine and gross motor skill delays. Also, he is what we call “hypersensitive” to different stimuli – lights, noise, etc. It’s getting better as he gets older.
Willie, at 14, is a very smart, creative kid. He is a filmmaker. He has had his own YouTube channel since he was nine (khAnubis Productions). He would do stop motion animation using Playmobile figures to recreate ancient Roman history. There’s a whole subgroup he found on YouTube who do this. He’s really into science and history, and was obsessed with ancient Egypt for a while. He could tell you everything you ever wanted to know about ancient Egypt! The entire mummification process … I learned a ton! From there he became interested in dinosaurs, but he didn’t leave ancient Egypt behind completely, he made up a race of ancient Egyptian dinosaurs. He had scientific names and all that. Then he got into evolution. Than future evolution – what animals will look like 100 million years in the future. So he learns an enormous amount!
It’s very common for people who are on the autism spectrum to have interests that are “an inch wide and a mile deep.”
My younger son Jakey is completely non-verbal, but he doesn’t have any fine or gross motor skill delays. He is “hyposensitive. He is what we call a sensory-seeker. He is looking for deep pressure hugs. Loud noises get him excited! Things that are overwhelming to a lot of people on the autism spectrum, he just gets really revved-up by them. Nothing bugs that kid.
Jakey is very sweet-natured. When he is not sure what is expected of him, his default is to smile. Also, he loves hugs. A lot of non-verbal children who can’t express themselves and find that frustrating will hit or scream or kick when they are done with something. Jakey would just hug. If he wants something, he will smile and make eye contact (many autistic children don’t make a lot of eye contact), and lead you over to whatever he wants.
Those two are full brothers, and see how different they are!
What first prompted you to get your sons tested for autism?
When Willie was about three, we knew he was developing differently. He was our only child at the time, so we had nothing to compare him to. He was obsessed with letters and numbers. We just thought he was brilliant! When he was about 18 months, I had some magnetic letters on the refrigerator, and he was interested in them. Within about 10 minutes, I was able to teach him 10 letters! By the time he was two he knew all of his letters; by the time he was three he knew them all in alphabetical order; before kindergarten, he taught himself how to read. He didn’t have the fine motor skills to write yet, but he would have me write the alphabet as he would recite it. Same thing with numbers. I remember when he was about three one of my cousins asked how high Willie could count. She was expecting to hear 10 or 20, but I said: “We are stuck at 109.”
Willie’s preschool teacher recommended we get him tested. She said, “There is something more here than just brilliance.” Our view was, “There’s no way this kid’s on the autism spectrum. He’s far too affectionate.” We did notice he was having speech delays. He was talking, and labelling objects, but he didn’t converse. If you asked him a question, he would repeat it. That’s called “echolalia,” when children repeat words or phrases. Depending on his inflection when he repeated the question, I could tell whether the answer was yes or no, but we realized other people would need to understand him. We knew he would at least require some speech therapy.
With Jake, I knew much more. When he was a year old, he wasn’t pointing. What happens a lot of times with autistic children is they don’t point at things. In their mind, if they see a bird, of course mom sees the bird as well. At 18 months, it seemed like he was just about to start talking, but it just wasn’t coming. I went to the pediatrician, who said it wasn’t a big deal, but when he wasn’t talking at two years old, I asked for a referral for an autism specialist. We actually participated in a study to get the autism diagnosis, because insurance didn’t cover it.
I was really lucky – I had family members with children on the autism spectrum, so I had that emotional support. People just got it. Especially when it came to how different the two boys are. One relative recommended we look into Applied Behavior Analysis (ABA) therapy for Jake.
What is Applied Behavior Analysis?
It’s a form of behavior therapy. A therapist works with the child intensively (25 – 40 hours per week), breaking down skills into very small steps and giving positive reinforcement.
One of the goals we’ve been working on at Autism Society of Oregon is getting autism therapies, including ABA, covered by health insurance. I have learned more about insurance than I ever thought I would! The Oregon Health Plan (OHP) is now covering ABA therapy, as of Jan. 1, 2015. Out of the commercial health insurance plans, some have been covering these therapies for a year or two now, others are just starting to. We’ve worked a lot on legislation, and on the administrative processes. It’s been a huge success. But I am particularly proud of getting OHP to cover autism services, because those families are the least likely to be able to pay out of pocket for autism therapies, like ABA. Until recently, the only way parents were getting ABA services for their kids was to pay out of pocket, which is $25,000 to $40,000 per year. There are 9,000 kids in schools in Oregon with an autism identification. That leaves a lot of kids who are not getting sufficient or appropriate services.
What do you feel are some of the best resources provided by Autism Society of Oregon?
The Autism Society of Oregon is all about helping people on the autism spectrum and their families find resources, education, advocacy and support. It’s about helping improve daily life in the here and now.
We have a workshop program – last year there were 21 workshops on topics ranging from puberty to dealing with unsafe behaviors to alternative and augmentative communication systems. We are co-sponsoring a workshop on the K Plan, which is a new program in Oregon to offer support through the Department of Human Services (DHS), and providing a day-long workshop on housing for adults.
Our website has a ton of information, including our calendar of events (everything we are doing, as well as everything we heard about throughout the state), support groups by region, and helpful links and resources. We are working on a Frequently Asked Questions section. Information referral is a big part of what we do. Questions range from “How do I get my child diagnosed?” to “My child has just been diagnosed, what do I do now?” to “How do I navigate transitioning to adult services?” to “I am an adult who may be on the autism spectrum, how do I get tested for that?” We also get a lot of questions from families moving to Oregon who want to know what resources are available here.
Would you please explain “Take a Break on ASO?”
It’s an evening out for parents or other caregivers. It includes a $25 gift certificate to a restaurant of their choice, two movie passes, and the ASO will also pay $52 for respite care. We have gone from providing this much-needed break for 60 families a year, to providing it to over 170 families. There used to be a six-month waiting list, but now there’s no wait. It’s so important for families to just be able to get out for an evening and recharge. People act like we are giving them the sun, moon and stars!
Does Autism Society of Oregon have any upcoming events to watch for?
We have the Autism Walk on Sunday, April 19 at Oaks Park (watch for similar events in Astoria on April 11, and in the Bend/Redmond area May 2). Over 2,500 people attend! It’s a fundraiser, and it’s also for raising awareness. It’s really important to me that this event is a place where families are having fun because their child is autistic. So often – due to the sensory issues and the anxiety that can be an issue – it can be difficult to go out and do things as a family. And this is absolutely for those families. It’s a carnival atmosphere – we have face-painting, and we have characters from Star Wars, and breakfast, and a gluten-free sample area. We are usually done by noon, and we also sell discounted ride bracelets, so people stay and enjoy the rides as well. We would be delighted to have anyone who would like to join the activities, or to volunteer. It’s a lot of fun!
Photography by Lillian Reid