FAQ

The following is a short list of FAQ’s that address some of the questions we have received from my video comments. I try to answer on the comments themselves, but this also helps to have it in one place, and often my mom answers those I can’t or because it is asked from her perspective.

Question About Hugs:
My grandson is an Aspie and I get a hug very rarely and when I do, he pulls away after just a few seconds. It is really hard for me. This question is to Taylor’s Mom… did Taylor hug you at all? Do you have any suggestions for me? I know it should not bother me, but it does.

Robin:
I don’t think that there is anything more special than a child’s hug… so of course it hurts. I was fortunate, because Taylor was able to cuddle. She didn’t look me in the eye much, but she didn’t mind being hugged. What I’ve learned is that, due to sensitivities, a brief hug from an Autistic or Aspie child is all the more of a gift–because it may actually “hurt” to give it to you. So that brief effort means the world–your son is risking getting hurt (sort of like fleece hurts Taylor’s palms) in order to show love and receive it. He probably feels he has to pull away quickly, but the fact that he gave it at all means a lot. I know you cherish ever single second!

Question About Improvement & Results:
When did you see improvement and what is the most important thing you did that got results?

Robin:
When Taylor was diagnosed, I was frantic to find what would help. I read like crazy, talked to everyone I could, and while the local pediatrician wanted to help, he really didn’t know much (it was 15 years ago). So I started to go through the monthly letters I’d written to both my son, who was four years older, and Taylor, since they were born. In these letters, I described our daily life, changes, etc… I compared them, and looked especially at the one year mark, because Taylor had seemed fine then, and began to regress after.
It was there in black and white: We took Taylor off of soy milk and put her on regular milk. And she was drinking 5-7 bottles a day! So we tried taking her off. Sure enough, within three days she was “with us” in a whole new way. It was amazing to see her start to point and try to communicate. She began to get better right away, but she had lost a year, so there was a lot of makeup to do. My local docs didn’t seem to think it was the milk–but I could not believe that seeing our results. We finally took her to a gastroenterologist (at our own expense since the doc said it wasn’t worthy of exploration) who was a specialist at Georgetown University Hospital and he pulled out three, 20-year-old studies on milk causing a mucus in the brain of children.

Question About Adaptive Learning:
How did Taylor learn to learn differently? Can you give me an example?

Robin:
Once Taylor was back “with us” more, we were able to really reach her. But we also realized that she would always have a different way of learning and being. So we adapted to her. I felt really firmly that I needed to follow what worked for her and figure that out instead of requiring her to fit with the way I was trying to help her.

So for example, she often had food on her face and clothes that she didn’t notice. She didn’t pick up facial cues, so some of the kids at school thought she just didn’t care. We also thought that. What I learned was it was just a source of “disconnect” because she surely did want friends, and if being presentable was needed, she wanted to learn. But it wasn’t going to happen by nagging her to connect on something she simply could not connect on. So instead, I “went to her” style of learning. She’s literal. She gets facts much better than feelings. So we kept it to a simple task: Use your napkin to wipe your mouth after ever three bites.

This she could understand! This she could do! She didn’t have to read cues she couldn’t, or feel something on her face she didn’t, or notice something on her clothes that didn’t register–she just had to follow a simple rule of three bites and a napkin. Problem solved!

That is pretty much how it works for us (and this may not work for others, everyone has to find their own way). Find out the most literal approach, don’t try to get her to “understand” in a way she doesn’t, and set up steps she can follow.

Question About Regression:
Was Taylor “born” this way or did she regress? What were her behaviors like and what is her diagnosis now?

Robin:
Taylor seemed fine until she was one year old. She had words starting, and was just a super happy baby. More happy than most in fact. But by almost two, it was clear there were problems. The words were gone. She had started flapping her hands, screeching, and running corner to corner in the house. She could have a banquet of food in front of her on the table, but she didn’t look beyond a simple cracker on her high chair tray. She did not point and the only way she communicated a preference was to get her coat to go outside. Well, she would also communicate “no!” by going suddenly rigid and screaming, unable to be soothed.

Today she has no official diagnosis. She began to recover quickly after being taken off all milk products, and it was clear within three days that she was “with us” in a totally new way. She went to special education for three years and had special services and had an IEP written until she was in fourth grade. Today, her teachers only know about it if they look in her file, or if for some reason I need to explain a behavior of Taylor’s, such as a lack of sensitivity that borders on being rude. It is very rare, but it happens. Check out her College page to learn about her super tough IB school. I would never have chosen it for her, but she was sure she wanted such a hard program. I guess if she wants to go to Cornell, it’s not a bad thing at all!

Question About Sharing A Diagnosis With A Child:
My 11 year-old son has been diagnosed with Asperger’s since he was 2. He has some mild sensory issues and motor problems. He has received different types of therapies over the years but never for extended time. He is an A student in a regular class, a high achieving cub scout, and a kid with lots of “normal” friends. He is kind and generous and lives in a world that doesn’t have lying or cheating or hurt – his logical mind can’t process that!! He is funny and well liked by his teachers and peers despite his quirks. My question is, we have never told him his diagnosis. He is just our sensitive nerdy guy who loves science and space travel. Should we burden him at this age with a “label” that may seem scary or just let him continue being himself – label free. As parents we’ve never been in denial and have always given him the help his needed to cope but we never wanted him to see himself as different or “broken” some how. At what age should he be told. He seems so happy and non-phased right now but puberty is looming near? What are your thoughts?

Robin:
I’m not a psychologist and I don’t know your child of course, but at this stage/age I would say that sooner is better… so that it can be “different normal.” You don’t want him to feel like it was kept from him, and he might if you wait too long. He might think it is something you feel is abnormal. You don’t have to make it a big deal, so you might say, “You know, different people think different, and we have noticed you tend to think more like people that are sometimes called Aspies. That is just one of the things that describes you, you are a son, a baseball player, a student, an Aspie, a cello player…” I don’t know if that helps, it is just one mom’s two cents.

Question About Taylor’s Initial Severity & Age Of Improvement:
Thank you so much for sharing your story. It provides an incredible boost of energy to see such a vibrant young woman emerge from the darkness so many of us fight. My son Bowen is 8 years old and is non-verbal, non-potty trained and until recently, we believed very detached. We continue to search out new methods of communicating and are finding an ever increasing pool of intellect hidden behind the dimmer exterior. In addition, we’ve started a local foundation called the Bowen Foundation, to help other parents find the help they often so desperately need. I am so intrigued by your daughter’s outstanding achievements and was interested in what her initial severity was and at what ages her progress occurred?

Robin:
We are going to create a video that is a picture history next, but in short, at 24 months she was testing at 12 months, flapping her hands, pacing corner to corner in the room, had no communication except to get her coat to go out, and often screamed in response to stimuli.

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