Today, according to the Center for Disease Control, Autism Spectrum Disorder (ASD) affects about 1 in 54 children. A developmental disability that can cause social, communication, and behavior difficulties, ASD is known as "spectrum" disorder because there can be a wide variation in the symptoms it causes and their severity.
Maria Maffucci is a wife, mother, and the editor and director of The Human Life Review. When her son James was diagnosed with ASD, autism awareness in the general public was just beginning. She knew no other families with children on the spectrum, and her only point of reference was a character on a television show. I spoke with Maria about the challenges and joys that have come with raising a child on the spectrum, her experience navigating evolving Autism research and the still uncharted waters of autism in adults, and how she has learned to be an advocate for her son.
When was James diagnosed? And how did you receive that diagnosis at the time?
When he was two-and-a-half, going on three, we were living in New York City at the time, and getting into a preschool there is like getting into college. I’d found this wonderful preschool; James got in, and I felt so excited. He was very sweet and affectionate. He liked to play by himself, but he was our first child. But a couple of months after he started preschool, the director had a meeting with us, and the way she put it was, “There’s just something missing.” She recommended we have him evaluated. I hated her with a passion. I still think she was really insensitive the way she talked about it, saying that about a child: “There’s just something missing.”
We had him evaluated. Nobody came out and said “autism,” but they would say things like “this might be a ’soft sign’ of autism.” My idea of autism at that time was from this TV show Saint Elsewhere. There was a boy in it who had autism, and he basically didn’t speak, didn’t let anyone touch him, was really shut off from the world. That was my idea of autism. I thought, you guys are crazy! James is funny, he’s affectionate. He speaks. He had met all his milestones, but he stopped advancing in speech at three; he stopped putting sentences together. But the biggest thing was he didn’t seem interested in playing with his peers. He loved being with adults.
Eventually, he was just miserable at the school; I think sensory-wise it was just terrifying. So, we took him out of the school and started him in speech therapy. His therapist was wonderful because she didn’t try to label him or convince me of anything. She just worked with him, and he loved her. But I would hate anyone who mentioned the word “autism.” So I didn’t deal with it very well.
It’s ironic because before I had children, I would say, “Oh, of course, I would accept a special needs child. God, send me a Down syndrome child!” You have all these, like, romantic notions about how brave and wonderful you’ll be. Yet my first reaction was devastation. Like you’re telling me, my son has cancer. I also felt very isolated because I didn’t think anyone understood.
What helped you to come to terms with James’s diagnosis?
But I had met a woman at my church whose son also had some delays. I had James in a stroller, and she had her son, and she came up to me and said, “My son makes the same noises that your son makes.” We started talking, and I don’t remember all the details. But what I do remember is that if I didn’t have her, I don’t know how I would have proceeded because she was ahead of me every step of the way.
James was sort of on the front edge of the autism epidemic; there was a lot I didn’t know. We didn’t talk about a spectrum. But as I slowly met people in that world, I came to see that it was a spectrum and not everybody was as severe as everyone else. The thing we know now is that if you’ve met one person with autism, you’ve met one person. It’s an overused phrase because there are definitely similarities, but there’s not a one size fits all way to figure it out.
Once we started accepting it, it became like my favorite subject. I have no problem talking about it now. And a lot of what happened after that was good. We found a wonderful school. We met terrific people who we wouldn’t have met with a neurotypical child. And things were so much better.
I would say you have to have some time to get to acceptance, but once you get there, it opens up a whole new world. It’s the best thing, because if you can’t accept it, you can’t do what’s right for your child. I still know parents who fight that and say, “My child’s not autistic. He has this or that.” In the end, it doesn’t really matter what the label is. It’s really, what does this child need?
That’s what that first therapist taught me: stop fighting about labels and worrying about them. Just what does this child need? What are his strengths? You go on from there. I should stress kindness will help you to accept this much quicker than unkindness, which puts your armor up and you just want to prove them wrong.
What were some of the biggest challenges you faced as a mom when your son was young?
Back then in the public-school system, they had these special-ed classes where they would put all special needs kids together. The person who couldn’t walk with the person who had Down syndrome with the person who hit everybody because he was abused at home. These classes were sort of like a black hole. People didn’t come out of them well.
What I learned from my friend from church is you have to fight. Because if you can prove that the public schools can’t provide an adequate education for your child, you can sue them to pay for a private school, and these private schools are astronomically expensive, more than college tuition.
We had to hire a lawyer; we had to look for a program that would be a good fit for James. The amount of money that we had put out (we had to borrow) was astronomical. Little by little, we learned how to do this. So, for most of James’s educational life, we would put out amazing amounts of money on legal fees, sue the board of education, receive a settlement that would go towards next year’s tuition … and then do it all again.
One of the other hard things was dealing with well-meaning family and friends who didn’t understand what we were doing. They’d say things like, “Oh, I’m sure the public schools are good,” or, “I’m sure you could move to the suburbs and find a good school.” And the whole medication issue. We did not put James on medication until he hit puberty, and some people thought that was not a good decision.
Especially for someone like me, it’s hard when other people have other opinions because I like to please people. To be able to stand up to people, especially people you love, is hard. My dad died when James was four, before he was officially diagnosed, but he thought we spoiled him. Things like that would hurt.
Going out with him when he was a kid also could be difficult because people didn’t understand why he acted the way he did, because he looked totally normal. I’ve noticed it’s much better now. But when he was little, you’d sometimes hear people say, “Why is he doing that?” or, “That’s weird.” That kind of thing.
Finally, it was hard never really knowing if what we were doing was right—especially with research on autism always evolving. One day the research seemed to suggest it was connected to dry cleaning, another day it was Pitocin, which I had had during labor. One day it was tuna fish, and I craved tuna fish during my pregnancy with James and ate a lot of it. So, I felt guilty
Those things were difficult. But they were offset by all the good things.
Let’s talk about some of the good things.
James used to be very withdrawn, for example, in the elevator, he would sort of turn away and face the wall away from people; but somehow, after puberty and with medication, just an antidepressant, he became so outgoing that we started calling him the mayor.
He’s the kind of person who remembers everyone’s name, and he loves to say hello to people. My husband Bob and I would laugh if we were at a cocktail party with other parents from the school or a church function. We’d whisper to James, “what’s that person’s name?” and he would tell us. He was great. He would remember what apartment people lived in. He has an amazing memory. If he likes you, he’ll remember your birthday and what age you are. I’ll wake up, and he’ll be like, “Mom, guess what? It’s Uncle Jimmy’s birthday and he’s 62.” He’s very, very loving.
He’s also very funny. With autism, there are what they call islands of skills. They’ll have terrific skills in some areas, but then deficits in other areas. Although James is not a prodigy in any area like some, he does have those areas of strength. He brings out the best in people.
Usually people are extra nice because they immediately figure out. Like, for instance, if we go to a diner and the waiter comes over, he’ll say, “Oh, what’s your name?” The waiter will be like, “Tony.” “Hello, Tony. I’m James. This is my mother, Maria.” I’m not really shy, but I’m pretty reserved. So that helps me, too, because lots of times he reminds me that it’s good to know someone’s name and it’s good to say hello. James just brings out a lot of kindness in people.
When he was first diagnosed, there was this theory that autistic people have no empathy. We had to take him to a psychiatrist to get an official diagnosis for the school. I’ll never forget this. This doctor said, “They have no empathy. You could be dying on the floor, and they wouldn’t care.” This was an expert in the field!
We’ve realized now that some people with autism might get more attached sometimes to buildings or places than people. But it’s not a lack of empathy. It’s that they’re so sensitive that they can’t take the interaction and so shut everything out. People are very unpredictable; buildings are not. James and so many people I know on the spectrum and with other special needs, just have a purity of spirit that you just don’t find in other people. They tell the truth, sometimes that gets them in trouble. He might ask, “Mom, why does that lady have no hair?” He doesn’t realize that she doesn’t have hair because she’s having chemo. But there’s no meanness in it. I’ve never seen him do anything mean to hurt someone. It’s just an honesty—which is refreshing.
I guess it makes you realize also that all of us are on some sort of spectrum. It’s another cliché, but we all have special needs of some sort. We all have some sensory issues or OCD or anxiety. So, it doesn’t help to just make people other by labels. It’s how can you help?
Do you think having James as your eldest child has shaped your idea of what it means to be a mother? Or how you mothered your two younger daughters?
Yes. Our second, Anna, is two years younger than James, and when she was little she did some really weird things, OCD-like things. Bob and I would just laugh, realizing, “Oh, I guess all kids do weird things.” We were more relaxed.
My family has strong history of clinical depression and OCD, so I think that what having James first taught me (I hope I would have been this way anyway) was to always encourage my kids to seek out therapy or help when they needed it. I took their anxieties very seriously and encouraged us all to be open about it.
I think probably they suffer because I give so much attention to James. But I think the flip side of that is Anna and Grace are really compassionate people. We used to joke that Anna was James’s best therapist. Because part of dealing with autism is getting in someone’s face all the time, in a fun, gentle way, in order to interrupt their obsession to control their environment with scripted behaviors or zoning out. She was in his face all the time.
It was just so cute. She adored him and didn’t know anything was the matter with him until much later. Both my daughters always stick up for the underdog. I didn’t teach that necessarily, I think being James’s sister taught them that. I really think that we’re all better people because of James.
I think the hardest thing is that mothers feel that they should know the right answer for their children. With James, it’s been really hard, because you just don’t know sometimes if things are right, especially with doctors and medications and things. My faith as a Catholic woman, has helped me to accept that mothers are ultimately not in control of their children.
Can you tell me a little bit about the experience of parenting a child on the spectrum into adulthood? James had a regression a few years ago, can you tell me about that?
One thing is autism a developmental delay. It’s a comforting thing when you realize it’s a developmental delay because that doesn’t mean they stop developing. It doesn’t mean they turn 21 and then stop growing up.
James went to the public high school’s special ed program when we moved to the suburbs, and he thrived. Then when he graduated, he started a day program right away. I think a few things happened. We were hoping that James would one day be able to have some kind of job, so the day program was sort of like vocational practice; they did volunteer jobs at different places.
But James started getting tired of doing the same thing every day. Then in 2017, his grandmother died. And James started developing OCD type behaviors. For example, to get him up in the morning, he would sit up and lie down like eight times, and it was getting harder and harder to get him up.
Then we started him on a new medication, and it got harder and harder to get up. Then one morning I managed to get him out of bed and into the bathroom. And when he came out of the bathroom, he was still in his pajamas, and he wouldn’t move. If I came near him, he would try to swat me away, and he wouldn’t move—for six hours. I called his program and thought they would send an ambulance because I thought this is a crisis; I’d never seen anything like this.
Now I realize they weren’t as surprised as I was. His Medicaid coordinator said, “All you can do is wait it out. He’s either going to fall or if he doesn’t eat for a couple of days, we’ll have to hospitalize him.”
This started this period of regression where he would literally get frozen: on the stairs, in the bathroom. It just got worse and worse. We had to take him out of his program. His psychiatrist’s theory was that the only medication he’d been on long term was Zoloft and that for some people, these SSRIs bring on a mania. So, she started treating him with all sorts of drugs to break the mania. He just became a complete zombie.
In the meantime, I had heard about something called autistic catatonia, which is a new area of research. His doctor hadn’t heard about it, but I went to a workshop on it. There’s new research into severe cases where people on the spectrum will develop something that can be as severe as actual catatonia: they’re stuck in a position and stop being able to initiate activities, even eating. One of the factors that can bring it on is depression.
Another doctor that we went to said she’s seen many young people on the spectrum go through some sort of a setback when they’re young adults. It makes sense: just like college students often have a set back after they graduate, wondering “now, what do I do?” It happens for the special needs community too; they can get depressed and have a setback.
The research also suggested that this catatonia could be brought on by certain drugs, and James was on one of those drugs. I told his doctor I was worried about it. She said, “No, I’ve seen this before.” It was horrible because I did not know if she was doing the right thing. He started wetting the bed. One night he went to take a shower before bed, and I woke up the next morning at six and he was standing in the shower. He had never turned on the water. It was just awful.
But by the grace of God, the psychiatrist at his program changed. The new doctor listened to us and was receptive to the research we’d done. We talked about how he lost his grandmother. And I really think what brought it all up was the realization as he grew up that he really was different. So far, he had gone to high school like sisters, but then his sisters went to college, and they drive. James would love to drive.
His new doctor came to the conclusion that James was depressed. His previous doctor had put him on all these bipolar medications, but on no antidepressants. His new doctor said, “He’s had so many losses; let’s start him on something else.” He immediately started getting better. It’s been a slow process. But little by little, he’s really been getting better. Now he’s also seeing a behavioral therapist who helps us as a family, which we should have done a long time ago.
Are there any lessons you’ve learned from this experience you’d share with other parents?
My big message for parents out there is never give up hope and trust your gut. You may need to do your own research and push back against the experts. Special needs program psychiatrists see hundreds of people and settle into a fixed treatment regimen. Neither of James’s doctors had heard of autistic catatonia, and they’re psychiatrists who work with this population.
I would also advise parents to be wary of doctors using medication like a silver bullet. I’m not against medication; medication also saved James’s life. But psychiatry has become so focused on prescribing medications, and there’s so much more. There’s a new book out called Catatonia, Shutdown and Breakdown in Autism: A Psycho-Ecological Approach, by clinical psychologist Amitta Shah. Shah emphasizes the importance of holistic remedies.
Again, James is sort of on the front edge of the autism epidemic. Today, when you have a young child with autism, there are so many great programs out there, so much more support. Now he’s at the front end of the post-school autism population. Nobody knows what to do with this population, and the programs need to improve. We’re always going be on the front end of that. I feel like I have to educate people. Because this was terrifying to go through, and to know that other people are going through this too is so helpful.
What are some of the best ways people have supported you in parenting a child with ASD?
First, I should say my husband has been crucial here. Having a special needs child is very hard on marriages. In the schools in Manhattan you saw a lot of cases where the mother would get sort of obsessed with the child, and the father would feel left out or would withdraw. You saw also a lot of fathers not being able to handle disappointed expectations: “My son’s, not going to play baseball; he’s not going to go to Harvard,” that kind of thing.
Bob was never like that. He always accepted his son, he loves his son. When people say things like “Oh, it’s such a cross,” he gets a little annoyed. It’s not a cross. He’s our son. We love him. So what if he can’t play baseball? There are other things he can do. But I think, having him support me, even when I was a little bit nuts about it, just made all the difference. I think for parents, you can get through it, but you’ve got to be together. If one person’s getting too obsessed or something, you have to try to bring them down off the ledge.
Having extended family who love James for who he is has also been such a blessing. They’re also willing to learn about our situation and about autism. And they’re always happy to support James. When we had school auctions or things like that, they were always happy to come. They want to support the cause because they know someone with autism. They love someone on the spectrum.
Finally, having my family and my close girlfriends just be there for me when I’m despairing has been so important. My best friend from childhood has a son with Prader–Willi syndrome, which is a different kind of developmental syndrome. We’ll text each other at our worst moment or our best moments, and sometimes just being able to say to someone, “I’m going to go scream or run away” and to have them say, “I hear you” is the most helpful thing. Because I have many moments that I’m not proud of, and I just need that affirmation from other people that they understand how much pressure I’m under and that I’m not a bad mother, because in those moments I would feel like a horrible mother.
What is not helpful?
Sometimes people are mean and insensitive. They feel like they have a right to ask questions that they shouldn’t ask. For example, I wouldn’t ask someone whose husband has cancer, “How long do you think he’ll live?” You don’t do things like that. But people felt they could ask questions like that about James.
It used to bother me when people would dwell on the negatives to make themselves feel better about themselves. You would think that at a special needs school that you’re all kind of in the same boat. But people would say things like, “Well, James’s auditory processing is much worse than my child’s, so if he can handle it . . .”
On the other hand, it can also be very annoying when someone tries to always put a good face on it. Because that’s not real. If you’re not honest about it, then the people who feel despair feel like they’re bad people. That’s not helpful.
Also, judgment from the outside is never really helpful. People would question why we stayed in the city and say things like, “Surely there must be good schools in the suburbs.” Well, no, actually, not at that time, for James.
Do you have any advice for moms who may have recently received an Autism Spectrum Disorder diagnosis for one of their children?
Once you accept the diagnosis and you start dealing with it, there are tremendous joys that come with that. I remember going to birthday parties with James’s classmates, and autistic kids at a birthday party are like the happiest, most appreciative kids. Whereas, sometimes neurotypical kids get kind of jaded.
And the joy when your child does accomplish something, it’s like fifty times greater; you just feel like you’ve won the lottery. There is so much joy in it. But true joy is tinged with sorrow.
One thing I always tell people, not just with this, but having lost people in my family, when it happens, you just think you won’t move forward, like you’ll never feel better. You can’t wrap your head around it. But you always do move forward to a better place.
You also should never listen to people, even experts, who say things like, “Oh, he’ll never do this.” Nobody knows that. There are kids who were diagnosed with autism, who go on to hold jobs and have families. Then they’re people like James who was less severe in the beginning, but who is probably never going to hold a job. You just don’t know, and nobody knows.
Here at Verily, we love our Daily Doses—quotes or phrases that remind us that the world needs more of who we are. Do you have a mantra or phrase that helps you to have hope in the hard days?
My brother died when James was three months old; he was 33 and died of cancer. But right when James was diagnosed, I had this dream. It was my brother Robert on the beach, at the ocean—the place I feel the closest to God. He was letting me know that God is bigger than autism. That gave me a lot of comfort because Robert was James’s godfather. I felt like, okay, God is bigger than this. This isn’t as devastating as you think.
Now when I get overwhelmed, I just remind myself: put one foot in front of the other; that’s all you can do. Take that step.