(Photo: 5th Mobile Public Affairs Detachment, Staff Sgt. Antwaun Parrish)
My husband and I were in the doctor’s office. I knew what the doctor was going to say. In the three months we had spent taking tests, asking questions, and talking to the doctor, I had been doing my own research. I was confident that my son had Asperger’s. That was the only thing that would explain what was going on with our five-year-old. When the doctor said that was what he had, I was relieved. A diagnosis: Our son had Asperger’s. Our son had autism.
Before this, I only knew of autism or Asperger’s Syndrome as something other families dealt with–the little boy I met at family camp, a friend of a friend, or Max on the show Parenthood. It wasn’t until we started to suspect that our son had autism that this diagnosis became a tangible and real part of our lives. Once we received that diagnosis, we would be able to help our son.
Within a few weeks, we were able to start Applied Behavior Analysis (ABA) therapy. We are not the only military family with children on the spectrum. According to Autism Speaks, more than 20,000 military children have been diagnosed. While these children go through what all military children do, they have their own challenges:
1. Lack of support
Every autism family needs the help of friends, especially since a lot of us don’t have our families nearby. We need people who accept our children for who they are, don’t judge us and can be there to support our journey. This can be hard to find, and once we do find it, we know this kind of support is probably going to be temporary. Those close friends who support us the most eventually move or we have to.
What can be done?
The community needs to be open to all children. Have compassion when you are out and about and see a struggling child. Don’t assume they are just a “bad kid.” Be a supportive person and don’t be afraid to befriend others with special needs children.
Most military installations have an hourly care program. However, when you have an autistic child, using hourly care is complicated. You can’t just sign your child up, pack them a bag, and drop them off. Depending on the center and your child’s needs, hourly care might not work at all.
Megan, a mom of a six-year-old boy with autism had a bad experience while stationed in Alaska: “They kept coming up with things that were wrong with him, said he was deaf, had jaundice. One day I drove up and could hear him screaming from the parking lot. He was just having a meltdown, and no one was even trying to help him. That was my last straw.”
As parents of children with autism, we don’t want our child to be in that type of situation, and we don’t trust people who can’t help our kids. At the same time, we need a break just like all the other parents do. We want to be able to use hourly care but in a lot of cases, we can’t.
What can be done?
There are many things that can be done: Better training for CDC workers, creating spaces and rooms for special needs children that need that extra care, and not telling parents that their child can’t come back because of their special needs.
3. Family events
There are a lot of child-friendly events on base, from egg hunts to movie nights. But what happens when you have an autistic child? You can’t always trust that the event will be safe for them. There might be too many people, the room might get too loud, or there is no way for the child to enjoy the event.
What can be done?
On base, events should be aware of special needs children. Having an autism-friendly section in the yearly Easter egg hunt, having sensory-friendly movie nights, and letting parents know that there will be space for their children, too, are all ways to make public events more accessible for autistic children. Sensory rooms can be useful if the event allows. Getting the information out to the public about accommodations for special needs children is a must.
4. Limited duty stations
The Exceptional Family Member Program (EFMP) is a program to help maintain documentation of family member’s special needs. All active duty service members–those who receive a diagnosis and those going OCONUS–will need to sign up for the program. EFMP ensures that medical and educational needs are considered during the assignment process. That means you will only be sent to locations with the services that you need for you or your family member’s special needs.
The problem is, sometimes EFMP paperwork isn’t done correctly. Other times, a military family has to decide between a career and staying together as a family. EFMP doesn’t always work the way that it should. Karin, a military spouse, moved from Korea to Ft. Hood on a compassionate reassignment because of her son’s autism diagnosis because they did not have the proper resources to help him there.
What can be done?
Make sure EFMP paperwork is being processed correctly. Do more research to find out what autistic children need and what can they live without when it comes to a duty station necessary for the service member’s career. Families shouldn’t have to worry that diagnoses will hurt their career path.
5. Health care
From ABA to medical appointments, good healthcare is a must to those of us with children on the spectrum. The longer wait times to get in to see a developmental pediatrician are frustrating. They are the ones that have to make the official diagnosis. In some places, that wait can be 12-18 months. That length of time is unacceptable.
With moving so frequently, families too often leave a knowledgeable medical support system behind. Then they need to spend the time and energy to find new providers once they get moved. This complicated process is repeated every few years.
What can be done?
Allow families to have stability if they have good health care choices at their current location. Don’t change doctors for special needs families without their permission. Make sure those with autism have what they need to succeed no matter how long their parent is serving in the military.
2 Replies to “Here are 5 Challenges for Families of Autistic Milkids (and How Our Community Can Help!)”
My 7 year old has autism and a language disorder. The CYP in Great Lakes denied us care and discriminated against us while we tried to put him in hourly care. It also sucks that the director of the CYP is an XO’s wife so my complaints were ignored by our N9. I would think that all CDCs and CYPs would have training dealing with children who have different needs but there are no such trainings that are offered. I was also employed with a navy CYP and know I didn’t receive any of that kind of training. Even though autism is more mainstream than before, there is still a lot of people who need to be educated or made aware of it
Doors will be opened to those who are bold enough to knock..!
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