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A few weeks ago a friend asked me if his daughter could interview me about autism.
She was working on a high school project, one component of which was to interview a parent of a child with autism. I though she asked some interesting questions that I often hear and wanted to share the exchange. See below.
Q 1. After reading the Huffington Post article written about you and Alex, and how every day is extremely busy for you, I would love some more details on what your daily schedule involves regarding care for Alex and taking care of yourself too?
During the week Alex has school, so this is a “typical” day.
Alarm at 6:30am, I prepare Alex’s breakfast and lunch, he has a special diet (see below*) which requires that I make all his meals. During this time Alex typically rises and uses his iPad during breakfast (he is non-verbal so speaks with a program called Proloquo2go**). After breakfast he takes a bath with my help and we get dressed and get him to his bus stop, which is out front of our building. He has a transportation para who rides with him on the school bus. Alex returns around 3:30pm.
While in school I catch up on the news, do some meditation, take a yoga class, go to the gym and work from home. Working from home allows me to take care of Alex as a single parent and provides the flexibility to maintain my physical and mental well being to be sharp to handle any challenges autism sends my way. I work as a writer of books on autism, have an investor relations firm and am now involved with a film. When Alex returns we perform some of his sensory diet*** which includes some massage and a brushing protocol. We then go for a walk in Central Park and or run errands. I try and keep Alex in the community as much as possible and he enjoys interacting with the staff in the stores we frequent. Most of these stores are mom & pop small businesses, which is a nice benefit of living in Manhattan. Also this allows everyone in the neighborhood to know Alex, which is helpful if he ever wandered and got lost (which has happened).
Later in the evening his respite worker arrives. This worker does some homework and other tasks with Alex (such as clearing the table and working on small projects like drawing, matching letters and such). While this is going on I may go out on occasion, but typically exercise by running, swimming, more yoga or biking. In the warmer months I compete in races and triathlons to give myself goals to help bolster my fitness mindset.
At 8pm or so Alex gets ready for bed with a bath, takes some medications for his colitis, and we do a bit more of the sensory diet. Alex typically falls asleep by 10pm. While he is winding down I take care of emails, I am involved with the National Autism Association and the Atlas Foundation for Autism, so I typically have some work to do for those organizations. My downtime is dinner where I allow myself an hour of Netflix. In the evening I stretch and read a lot before bed.
That’s a typically weekday.
Weekends have the same cooking, sensory diet and errands, but we may have some special programs, such as swimming or sports, for kids on the autism spectrum. Also my parents visit us frequently.
*Alex has Ulcerative Colitis, which requires a special diet called the Specific Carbohydrate Diet or SCD. Basically it is all-organic, no starches, no grains, no sweets.
**Proloquo2go is a PECS or picture exchange program; basically it allows Alex to touch images of what he wants. You can also use the pictures to create sentences. Look it up online for more, its pretty cool.
***Sensory diet (something else to Google) basically for home means some gentle massage for 5 minutes twice per day and brushing, which we use a very gentle brush to stroke parts of Alex’s arms and face. The ideas is that this helps fade away anxiety experienced by those whose various senses are disrupted. It works quite well. I should mention that many if not most kids on the spectrum have sensory disorders and GI or gastrointestinal issues. These are issues that are not typically highlighted in the mainstream media, but they are amongst the most challenging to overcome.
Q 2. Are there many other autistic boys at Alex’s school or in your area? If so, do the parents come to you for advice?
Alex presently attends public school. The site he is at is an all special needs school. Not all autism, but there are three “autism” classes I believe, which would total about 18 students in all with 6 per a class. Kids on the spectrum like Alex need a lot of help during the day, so Alex has his own para at school. The class is called a 6:1:1, meaning 6 students, 1 Teacher, 1 Assistant, and usually some paras. I believe all the kids in Alex’s class are boys. Boys are 4 times as likely as girls to have or be autistic.
I do not hear from parents of kids in Alex class, but I frequently get emails and calls from parents I meet from my work with the National Autism Association (NAA) and Atlas. I also get emails from those who read my books or have watched the film trailer.
Q 3. When you first started with publishing books such as the Tips for the Parents of Autistic Boys, and beginning with “Big Daddy Autism”, did you anticipate how successful they would be in advocating for Alex and autistic boys in general? How had that success impacted your lives?
Well the movie is still shooting, but I have been happy to hear from other parents who tell me that the trailer touched them and are inspired by our story, so that is gratifying. The books were originally done to help educate myself, but I am happy to hear from parents, especially those who are ahead of myself on the autism learning curve, that something in the books was helpful to them and or their children.
Q 4. When Alex was first diagnosed, what were the most evident symptoms that led to his diagnosis? How have those changed, or have they at all, since he has grown up?
At first I did not know what autism was. He was diagnosed in 2002 at age 4, the year before though he began to lose some skills. Prior to the age of 3, Alex spoke normally. In fact he could count to 10 in 3 languages and was able to say on 9-11, “turn that off, that’s scary”, in response to news coverage of the World Trade Center attack. So the most evident symptom was loss of language. He also developed the habit of spinning around for hours and clapping his hands for hours.
Later he did become aggressive and seemed to frequently have migraine headaches. He also seemed to have no sensitivity to the cold (he would walk outside in the snow without shoes – removing his shoes before someone could stop him) and was very sensitive to the heat (he would easily overheat if the temperature was 80 or more). On the plus side he does have unusually good balance. I bet he could be a surfer one day! Recently he has been more communicative, with the help of the iPad, and once he was diagnosed with ulcerative colitis, and treated for it, he began to have improvements in his sensory issues. He also now no longer gets headaches or aggressive. He is happier now than several years ago and seems to be improving each month.
Q 5. My dad mentioned your research on the connection between vaccinations and autism—could you share any thoughts on that?
Sure. You may have heard some parents blame vaccinations for their children’s autism. Generally these are cases of regressive autism like Alex. Many have reported that their kids lose skills, such as speech, and have seizures after a round of vaccinations. In Alex’s case, he developed a fever after a vaccination round at age 3, six months later he could no longer speak.
My believe is that all of us, the last couple of generations, have seen our genes/cells burdened with toxins from pollution in the environment, from antibiotics and other pollutants in our food supply and the heavy use of drugs, in particular antibiotics. This burden means that some of us reach a tipping point where some final insult, say a vaccine, may cause our immune system to become overwhelmed and break down. There is a high correlation between the increase in autism and the increase in autoimmune conditions. In Alex’s case, as a child he had ear infections, which led to him being on antibiotics as a baby, this I believe disrupted his immune system (as antibiotics can harm your GI tract, which is 70% of the immune system) and led to his body being not prepared for the vaccines he received at age 3.
Q 6. In terms of treatments and therapies that have proven effective in Autistic children, have some of them been helpful to Alex specifically? Is it challenging to get him to participate?
Alex’s GI treatments have been helpful, but they are what one would receive if a diagnosis of ulcerative colits were in place, so they are not autism treatment per se. But without the means to communicate sufficiently in many cases, I believe a significant number of GI problems go undiagnosed in kids with autism or are attributed to autism itself. Also the iPad, as a communication and social tool, has been helpful to Alex and many kids. NAA is working with Apple to present these technologies to the public and increase awareness of their capabilities. Also, the SCD diet I mentioned has helped Alex with his colitis, but also with his overall health, which has just made him feel better and subsequently happier and more communicative. He also takes various supplements due to his diet and because he has some deficiencies, such as vitamin D (which is common in autism). For us compliance has not been difficult once introduced, but it can be challenging to get kids to follow a diet or take pills. It takes a lot of time and patience to work with Alex, but he is worth it.
