Autism: The Parent-Driven Life

Parents always play the biggest role in a child’s life. This is how it’s meant to be. But with autism, there seems to be a unique dynamic: parents at the forefront of discovering treatments and solutions for their children with autism, sometimes even leading to a recovery that would not have happened if they relied solely on mainstream medical advice.

Basically, the world of autism is a world of highly involved, educated parents. The operative word in this world, however, is not education or knowledge but “hope.” Many parents find that their pediatricians are not particularly hopeful, but when they move outside the mainstream they find a lot of hope. Hope that’s cultivated by stories of children who have made significant, and sometimes completely incredible, gains because the parents did not rely on what they were first told.

Actually, Cheryl has read quite a few books by parents who have be hopeful, proactive, and (as needed) pushy – and as a result, saw their child come out of autism. Or, as they say, “lose the diagnosis.”

The parent-drivenness was really highlighted for me earlier this year when Cheryl went to a conference of medical professionals (MDs and PhDs giving talks on treatment) that was populated also with educated, involved parents (mostly moms).

It was also highlighted for me – and Cheryl hates when I tell this story – when Cheryl met with a pediatrician and discussed options for Cullen. What was remarkable to me was the degree to which Cheryl spoke his language and on his level, and occasionally (sorry, Cheryl) made gentle corrections to his statements. (“Generally that test is not used in a situation like this…” “Yes, but when such and such is the case they use this test instead of that one.” “Well, that’s true.”)

You notice I highlight my wife here. That’s because she truly has been the Researcher in Residence for Cullen, reading books by leading physicians and researchers and attending “support group” meetings that are more like seminars than support groups. (We recently puzzled over an autism “support group” dramatized on a TV show. In that group, parents sat around in a circle and talked about their feelings. In the support groups we attend, parents are activists and fighters sharpening weapons for the battle against school systems and insurance companies, and sharing information on treatments, nutrition, and new studies.)

For a child with autism, the parents are the best advocates and need to be the best advocates. For a child with autism, parents need to become very, very educated—because a lot more is being learned every day, and there’s a lot of hope if you go looking for it. For a child with autism, parents need to be on top of everything from the child’s diet to the child’s doctors to the child’s therapies to the child’s playtime to the child’s… everything.

More on this soon! But the main point I wanted to make is how amazing it is that, in the world of autism, research and remedies are so significantly parent-driven. It’s exciting, but also exhausting!

Stuff Cullen Likes

Some stuff Cullen likes:

1. Frogs

2. Fountains

3. Flying

4. The Ocean (my oh my does he like the ocean)

5. Go Go Car (this is quite different than “go go stroller” or “stay stay home” – actually, one of the first exciting “sentences” Cullen ever said was when we were in an antique shop and Cullen said, with great earnestness, “I want go go CAR.” Henceforth, “go go car” has become synonymous with “may we please blow this popsicle stand and do something truly interesting?”)
6. Dinosaurs, Lizards, and other things that say “roar”

7. Slides and Stairs

8. Brocci (much easier to say, and spell, than broccoli)

9. The end of songs (this is when you get to applaud and say “yay!” – not sure how this started)

10. Singing along (a new development)

For proof of some of these, see Cullen's Facebook page. Just posted a new video of Cullen, brocci, and "singing." But one thing I've realized is that Cullen is a low talker, so you have to listen up!

Anatomy of a Good Week

This past week was a good week. Since I’d like to have more good weeks, I thought I would analyze this one… What made it so good?

1. Cheryl’s parents visited.

2. Great weather. (See #3 and #4, below.)

3. Visit to the beach with Cheryl, her parents and Cullen. Pics on Cheryl’s Facebook tell the story...

4. Visit to the Norfolk Botanical Gardens. Nice place, and we ended up with a season pass cheap. This will be a good place to take Cullen, walk, explore, etc.

5. Visit to Yorktown. Cheryl’s dad and I arrived to the battlefield just in time for the walking tour, which was quite moving… because the history of the battle itself is a pretty amazing story.

6. Cheryl’s birthday!

7. Cullen seemed to do quite well this past week. He’s (almost) always a joy to be around, but this week his everyday charm was combined with other signs of steady development.

Okay, there you have it. You now have all the ingredients you need for a good, even great, week.

The Social Network

Cullen has a pretty wide social network. He has mom and dad, known also as chief researcher and play therapist respectively. He has a speech therapist, a team of ABA therapists, multiple doctors, teachers and friends at preschool, a team of "attendants", grandparents, aunts and uncles, and cousins. He has a budding online network too.

Nevertheless, one of the hallmarks of autism is a deficiency in understanding and imitating social cues. In extreme cases, this might mean an autistic child is drawn completely into his or her own world, not interacting at all with the outside world—this is the image I once had of autism. But it might also mean that a child keeps quite active yet has a hard time “getting” the social stuff, which can create “non-typical” behaviors.

Last year, around the time Cullen was first diagnosed as being on the autism spectrum, he was more extreme than now. His would not make good eye contact, did not choose to engage with you (he’d duck and run), preferred repetitive behavior, and preferred repetitive behavior.

Cullen has greatly improved in the past year. His eye contact is better, he will stay focused on a task (well, some tasks), and he’s even affectionate.

But as it turns out, life is pretty social…relational. So the social problem shows up in all sorts of ways, many of them subtle. Turns out pointing is a social thing—that’s one thing Cullen cannot seem to comprehend. Language is of course social—if you say “Hi Cullen” he is likely to respond “Hi Cullen.” When he does say “hi” it is still often while he’s on the run or turning away. But he’s getting there.

It wasn’t always this way for Cullen—we so remember how he, as a little 7 month old, “held court” at his great-grandparents' house. He was squealing and laughing and enjoying being the center of attention. But something went wrong before age 2, and he withdrew. And after lots of intervention, he’s been making a comeback.

We’re busy, and we’re thankful.

Autism: Just the Facts

One year ago, just after his second birthday, Cullen was diagnosed with autism. Since that time, we have learned much about this world that we knew virtually nothing about before. Actually, we've learned about a lot more than just autism...our view on so many things has grown or shifted.

We've decided to begin sharing some of what we've learned with our family and friends. That's you! We have also started a Facebook page for Cullen. You can go there and "like" Cullen's page if you're interested.

Here's a good place to start... Top 10 Facts about Autism. In future posts, we'll take a more personal look at one family's journey into this world--this sadly expanding but ever hopeful subculture--of autism.


Top 10 Facts about Autism

1. Autism is a neurological and medical disorder in which the parts of the brain that control communication, behavior, social interaction, learning, sensation, and motor coordination aren’t functioning properly.

2. Autism is unique in that it can strike unexpectedly, seemingly out of nowhere. A healthy and neurologically typical infant can suddenly regress into autism between the ages one and two.

3. The rate of autism in 1983 was 1 in 10,000 children.

4. The latest research in the journal Pediatrics reveals that autism affects 1 in 91 children (1 in 58 boys), with 673,000 currently affected. The CDC’s latest study shows a rate of 1 in 110 children (1 in 70 boys). 50,000 new diagnoses will be made yearly.

5. Autism has become one of the most widespread childhood epidemics in recorded history.

6. The exact cause or causes of autism are unknown. It is increasingly affirmed that there are clearly environmental (i.e., not just genetic) factors at play.

7. Each person with autism is affected in different ways and to varying degrees. Some show only a few autistic characteristics, others display many or all.

8. Early signs of autism include lack of eye contact, lack of babbling, lack of engagement with new people, obsessions with certain toys, lack of imaginary play, engagement in obsessive repetitive movements, unusual sleep patterns, and sensory issues (extreme sensitivity to tags in clothing, or to sound, for example).

9. Many children with autism also have medical issues such as gastrointestinal dysfunction, immune deficiency, and seizures.

10. Through nutritional and medical intervention and intensive therapy (such as language, occupational, and behavioral therapy), some children completely recover from autism to the point of losing the diagnosis, while a vast majority make significant improvements. Early detection and intervention is paramount.


Compiled from “The Autism Book” by Dr. Robert Sears.