SHERRILL, N.Y. 鈥� Alexander Brown swings back and forth on a makeshift hammock bolted to听a wooden beam in his living room. The swaying seems to soothe the otherwise uneasy 14-year-old. His mother gazes at him from the couch and their eyes briefly connect.
鈥淚 would love to be in Alexander鈥檚 head just for a few hours,鈥� said听Diane Brown, her head slumped against her hand. 鈥淗e鈥檚 having a hard time going through puberty right now.鈥�
Alexander is confused, moody and frustrated 鈥� all very typical for a听teen during adolescence. But Alexander鈥檚 transition is especially difficult for the Browns, a family of six in Sherrill, N.Y., because he is severely autistic.
Puberty is causing chaos in Alexander鈥檚 once-predictable world. He听can鈥檛 talk and struggles to express himself. 鈥淗e鈥檚 angry and he鈥檚 sad . . . and he doesn鈥檛 understand why,鈥� Brown said. 鈥淚 truly feel for him.鈥�
Alexander, the third of four children, rarely sleeps through the night. He gets up at all hours to wander the kitchen, take a shower or throw a tantrum. He鈥檚 begun lashing out physically.
Brown, 45, is exhausted. She averages four hours of sleep a night and powers through most days with the help of Red Bull.
Alexander Brown, 14, sits in his living room on Thursday, May 14, 2015. He was diagnosed with autism at 18 months. Alexander is having a hard time with puberty and is lashing out physically (Photo by Heidi de Marco/KHN).
The Browns all have what they call 鈥渨ar wounds鈥� from dealing with听Alexander: scratches, bite marks and bruises. When he鈥檚 in a mood, they say, no one is safe, not even the family dog.
鈥淗e clawed up my arm and it angered me,鈥� said Alexander鈥檚 11-year-old听sister Maya, the youngest in the family. 鈥淏ut whatcha gonna do?鈥�
The sixth-grader has to be alert when her brother is around. 鈥淚f I see听Xander run towards me, I just run into another room so I don鈥檛 get attacked,鈥� she said. 鈥淵ou grow used to it.鈥�
Brown, who sneaks cigarettes every now and then to calm her frayed听nerves, compares the experience to riding a roller coaster without a restraint 鈥� for child or parent.
Worse, she said, it鈥檚 the family鈥檚 second time on this terrible ride.
Isolated But Not Alone
Alexander has a 19-year-old brother, Connor, who also has severe听autism. The eldest child, he can鈥檛 speak much or care for himself. Six years ago, he became so physically aggressive that the Browns couldn鈥檛 handle him.
The final straw came when Connor knocked his parents down as they听tried to force him onto his school bus. The driver insisted he be听secured to the seat using a soft body restraint to keep his arms from听flailing. After that, the Browns decided to move Connor to the听, a听24-hour-care facility at the same site where he and Alexander attend听school during the day.
鈥淲e sat on the back step鈥nd we cried,鈥� said Diane Brown, her听voice trembling. 鈥淚t was a realization at that moment that this was something that we had to do for all of us.鈥�
Coping with two severely autistic sons five years apart, the Browns听have often felt isolated. But their troubles are far from unique.
For every 68 American children, one is estimated to have autism听spectrum disorder, a developmental condition that impairs听communication, behavior and social interaction with varying degrees of severity,听.
Scientists don鈥檛 know all the causes, but most agree that the condition has a strong genetic component. It afflicts many more boys听than girls, and parents of one child with autism are at higher risk of听having another. 听found that nearly a fifth of young children with older autistic siblings had the disorder, and the risk rose substantially for infants who were male.
Many families are unprepared for a second diagnosis, much less for guiding two autistic children into adulthood.
Aggression is relatively common though hardly universal in autistic听kids. , parents reported that 68 percent had demonstrated aggression toward a caregiver at some point and 49 percent to non-caregivers.
Other research has found that aggression among autistic children听contributes to parental isolation and exhaustion, threatens the safety听of the kids themselves and other family members, is the leading cause of stress for caregivers and is the primary reason that families seek to have them placed outside the home.
Research is limited on autistic kids who are going through puberty.
But听 听suggest that while children鈥檚 behavior may improve during elementary-school years, it can deteriorate with the physical and hormonal changes that come with adolescence.
Diane Brown, 45, rest her eyes for a moment while her 14-year old son plays in the backyard of their home in Sherrill, New York on Thursday, May 14, 2015. Brown says she hardly gets any sleep because her autistic son wakes up several times a night. 鈥淚鈥檝e got real good at taking 15-minute naps,鈥� she said (Photo by Heidi de Marco/KHN).
The vast majority of autistic kids remain in the family home, and just听2 percent live in outside supportive facilities, according to听. Some advocates and providers say home is the best setting for听such children, because the risk of abuse, neglect and exploitation is greater elsewhere. Others say living in a more structured setting may offer advantages for some kids and their families.
鈥淭he reality is that for a lot of autistic kids, normal family life is pretty chaotic. A group home might add a little bit of structure to the equation,鈥� said Brad Boardman, executive director at the , which provides individualized education but not residential care for children with autism in the San Francisco Bay area.
鈥淚t can also be beneficial to families who have got into a negative pattern with a child or are seeing aggressive behavior at home,鈥� he added. 鈥淪ometimes a move into a residential group home can be a way to reset the relationship.鈥�
The Browns have wrestled with this question for years: What is the听right thing to do 鈥� both for the child and the family as a whole?
Every Day A Struggle
When Connor was born, his mother knew next to nothing about autism.听听鈥淗e didn鈥檛 make eye contact. He cried a lot. He was a very difficult infant,鈥� she said. 鈥淢e being a first-time mom, I thought, 鈥業鈥檓 doing everything wrong. This is my fault.鈥� 鈥�
He was diagnosed at 3, Brown said, and never received the early interventions commonly used today.
Diane Brown makes a shopping list with her autistic son, Connor Brown, on May 13, 2015. Connor, 19, was enrolled at the Tradewinds Residential Facility after a period of aggressive behavior during puberty. Diane visits Connor every other day. 鈥淚 see it as him going to college,鈥� said Diane (Photo by Heidi de Marco/KHN).
Connor was always aggressive, Brown said. His reaction was always to听get mad, throw a tantrum or break something. And when he reached puberty, his behavior became much worse.
鈥淓ver since I can remember, Connor would throw random fits,鈥� said听Spencer, 17, the second-oldest of the four siblings. 鈥淗e had my mom in a chokehold once鈥nd I had to try and help.鈥�
Alexander鈥檚 life has been easier, partly because Connor came first.听After spotting Alexander鈥檚 early cognitive delays and unusual听emotional reactions, she took him to a pediatrician. He was diagnosed with autism spectrum disorder at 18 months and began receiving a wide range of state-funded services, including speech, behavior and occupational therapy in the home.
Still, Brown was devastated. She kept thinking about the first time听she held Alexander, full of hope. 鈥淵ou expect as a parent that you鈥檙e听going to love your child and instantly have that bond,鈥� she said. 鈥淭hen they don鈥檛 love you back, and you blame yourself.鈥�
鈥淚 honestly felt like I didn鈥檛 have the strength to do it again.鈥�
Learning To Cope
To relieve the stress, she about having two autistic sons. She did yoga. She took a job at a local cafe to have something to do outside the home. And she took care of Connor and Alexander the best way she knew how.
Five years ago, not long after Connor moved into the residential program,听Brown said she became severely depressed. 鈥淚t hit me really hard for a while. But I had to quickly snap out of that.鈥�
Spencer and Maya struggled, too.
鈥淚t鈥檚 hard to have friends come over when all you hear is screaming in听the background,鈥� Spencer said. 鈥淭hey鈥檒l ask, 鈥榃hat鈥檚 that?鈥� 鈥� And with a shrug of his shoulders, he replies, 鈥淥h, that鈥檚 just my brother.鈥�
Alexander Brown, 14, sits in his living room on Thursday, May 14, 2015. He was diagnosed with autism at 18 months and will soon move into a 24 hour care facility (Photo by Heidi de Marco/KHN).
On their good days, Maya said, Connor and Alexander can be 鈥渢he听sweetest boys.鈥� Alexander will sometimes kiss her cheek or play with听her on a trampoline at their grandmother鈥檚 house. 鈥淚t鈥檚 not like they鈥檙e monsters or anything,鈥� Brown said. 鈥淭hey鈥檙e just a little bit different.鈥�
Lately, though, Alexander has become harder to handle. He鈥檚 taller听than his mother now, and he will outweigh her soon. Diane struggles to听get him dressed and shave his sprouting mustache. He doesn鈥檛 lash out as violently as Connor did, but she can鈥檛 control him when he does.
Brown鈥檚 husband 鈥� the children鈥檚 father 鈥� recently moved out of the听house, because of escalating tensions, Diane Brown said. (Research on marital听breakups among parents with autistic children is mixed.听 shows virtually no difference with other families but other work suggests a greater rate of divorce, or as their behavior becomes difficult.) 听听
Brown鈥檚 husband comes daily to help with the children and household听tasks. But his wife frets about everyone鈥檚 safety and well-being, including Alexander鈥檚.
鈥淲hen you have a child who just existing is so hard for them and you can see them struggle with it every single day鈥ou want to make it better,鈥� Diane Brown said.
She has sadly come to believe that 鈥渕aking it better鈥� means giving Alexander the same around-the-clock care that his older brother receives.
鈥淎lexander, just like Connor did, has outgrown our little family here,鈥� she said. 鈥淚鈥檓 certain at this point it鈥檚 time. Time for someone to step in and be stronger and more awake than I am.鈥�
Diane Brown sits on her porch swing on Thursday, May 14, 2015. 鈥淚 have four children. Two of them have a label, two don鈥檛. Each have their own needs and I need to get my act together and be mom to all of them,鈥� she said (Photo by Heidi de Marco/KHN).
Brown has put him on the waiting list for the facility where Connor听lives, 听a 15-minute drive from the house, and expects an opening听soon. There, he, like Connor, would be able to see counselors and behavioral therapists, enjoy some recreation and get the structure and support he needs.
鈥淚t鈥檚 not elaborate, but it鈥檚 comfortable and fully staffed,鈥� she said.
Alexander鈥檚 care, like Connor鈥檚, would be paid for by the Social Security Disability Insurance program, state school funds and Medicaid.
Maya says she understands. 鈥淚 know it will be better for him and safer听for us,鈥� she said. 鈥淏ut I will miss him so much when he鈥檚 there.鈥�
Talking of Alexander鈥檚 departure, Brown seems less at peace than听resigned. She knows she鈥檒l feel emotional and empty when he鈥檚 gone 鈥� that鈥檚 how it was with Connor.
鈥淚 just want them [both] to be happy in their skin,鈥� she said.
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