They recall instances when Justin didn't seem in the moment, when they thought perhaps he may have just "spaced out" at the time. But those moments were not just their child zoning out. They were seizures.
Some research shows that children with autism are prone to seizures and that 50 percent of children diagnosed as autistic would have abnormal EEGs if tested.
But again, there is great debate over whether and when to treat. And the problem is compounded by the fact that the seizures might go unrecognized by the untrained eye. Without the tests, even significant seizures can be missed.
Many top neurologists caution that these tests would by no means make sense for every child with autistic symptoms.
Many experts say there may not be the equipment or expertise to do it. And top neurologists say there is no clear research on how many children this would really help.
"Doing an EEG and MRI in every child with autism is absolutely not recommended," said Dr. Robert Tuchman, director of the Autism Program at Miami Children's Hospital.
Tuchman and others said there would have to be a sign of something else, maybe the staring or some other symptom that might lead a doctor to believe there is more going on. And it is possible that specialists have more experience in judging who might be best helped by these tests that "look at the brain."
But, what about the other kids? Wouldn't they be helped by a more scientific way to look for abnormal brain activity? Most experts said it was not practical. There are not enough facilities and doctors who can perform these specialized tests to handle the volume.
Further, it's not clear how many children would be helped. Again, there is debate about whether a small amount of "abnormal brain activity," or spikes or an EEG, should mean treatment with anti-seizure drugs. The Kennedy Kreiger Institute in Baltimore, on the front lines of autism treatment and research, says it worries that EEGS for everyone would yield too many "abnormal" EEGs and that too many kids would wind up on anti-seizure medication for no reason.
At the heart of the matter: There is simply no research yet to show exactly which kids with seizurelike activity might really be helped. What the level of this seizurelike activity needs to be for drugs to make a difference, nobody knows.
The question is literally being studied now, in the field. Miranda believes that there is no harm in trying patients out on the drugs to find out, in a very controlled fashion. Many people, he says, do not benefit. But he does not view the drugs as harmful. Other doctors clearly disagree.
One top researcher working on this subject, who admitted it's fairly controversial, says the established medical community always has a hard time with change. He predicts that this method of diagnosis will eventually have to become standard.
And many neurologists have said that there are a number of reasons a parent might want to have an MRI or EEG:
If your child has had any regression
If they seemed to be developing normally, but then that stopped
If they have staring spells, or daydreaming spells, where they seem to "disconnect" for a time
That combined with good eye contact and good social skills could mean seizure activity, but only sometimes
Miranda's Web site has more specific information on what to look for and treatment options.