Autism in the Rural World

Dylanmarie Juarez, Cactus Contributor

“Your son is Autistic.” That was a sentence that I never prepared myself to hear. I don’t think there has ever been a parent who was. I always thought it could never happen to me, yet ten years after his birth, here we are on this roller coaster ride. I had spent my son’s first ten years of life trying to control the tantrums, crying, separation anxiety and lack of social skills. We had no idea it was all connected to one diagnosis. Although we now know what it is that we are dealing with, we have no idea what to do. It’s like being on a trip and having the map but not knowing how to read it. It can at times be frustrating and scary because I am afraid and think, “What if I’m doing this wrong?” Jennie McCarthy, a model/actress, once said, “Hope is the greatest thing for moms of autism. Hope is what gets us out of bed in the morning. I am on a mission to tell parents that there is a way.” ( Hope is one of the greatest gift for moms with Autistic children, but so is education. I believe that there needs to be more funding for education and services for children and families with autism in the rural areas. My hope is that more funding becomes available to assist the families with respite care, needed therapy and better education policies.

One of the biggest needs in a rural area for families effected by autism is respite care. People may be asking themselves, “What is respite care?” Well to a parent with a child with autism, it is the difference between sanity and insanity. This is a program that allows trained individuals to care for one’s child allowing the families to rest while giving the autistic child a safe environment. Many programs are available for individuals in larger cities but here in the middle of nowhere there are none. We have agencies that provide respite care but it is to all children. This is a scary thing for a parent, especially myself, because some of the children involved in these programs have juvenile records, some have been victims of molestation and many others deal with behavioral disorders. Also, these agencies don’t always have specifically trained staff to run their programs. For example, Horizon Human Service, Inc. has a weekend respite program here in Pinal County. They allow up to ten children a weekend to stay in one of their facilities, but their staff are not trained to handle autism behaviors. Most of respite staff are BHPP (Behavioral Health Paraprofessionals), which are the least experienced in their agency. The lack of training is mainly because of the insufficient amount of funding provided to these rural agencies.

Another important need facing the autism community in this area today is the requirement of therapist to assist families and the children. I can’t tell you how many times I’ve been told, “I’m sorry miss, we don’t have any therapist available right now.” Or “Let me try to reach the therapist and we will get back to you.” My favorite one is, “Well, my schedule is really full; I’m the only therapist in the entire agency in this area.” To a parent in need these are very frustrating comments to hear. I have been waiting for almost a year now to get a much needed behavior coach for my son and myself, in home. Yet again there is not enough funding in our area to help find the needed therapist to help my autistic child, so we wait. I was offered a family counselor once, but, how can that help? My son doesn’t fully understand his feelings or why they happen and expresses them at inappropriate times. When he should be sad, he’s mad or cries and runs away when someone is joking with him. I have seen the effects of children who were able to get the support needed and those who have not, first hand. For instance, I have several other family members that are also diagnosed with autism. One of them lives in Paradise Valley, with ability to pay out of pocket and the other lives here in Pinal County. My cousin *Jose, in Paradise Valley has the needed supports in his home such as a Behavioral therapist, Occupational Therapist, and trips out of state to conventions, to meet autism specialists. As someone who doesn’t have the means to do this and has to rely on state Medicaid, this is discouraging. Sitting next to my son here in our rural area is my other cousin *Michael. He, like my son, relied on the school to get most of his training, with almost no support for his family. Michael is now nineteen and still struggles with anxieties and has to be medicated. Is this my son’s future? My son is twelve years old; I don’t have too much more time. There needs to be more funding for therapeutic support or the children of this county are going to continue to fall through the cracks.

Lastly, there needs to be more educational support for autistic children who age out of school and more funding to provide support in class. Small schools, like the one that my child attends, don’t have the funding to provide a class for children with autism. I recently discovered that the classroom is set up as special education program but not specifically for autism. My son’s educational needs are being met but his behavioral and social needs are not. For example, my son has now learned his multiplication skills, his reading and comprehension has also increased, but his social anxieties and emotional needs have not improved. This is, to me, as important as his ability to do math. My son may be able to get a job after school but he will lack the ability needed to interact with others or express his emotional needs. Also, a child with disabilities are protected until they are twenty-one, but after their twenty second birthday, it ends. Imagine a person climbing a really tall wall and slowly succeeding, then on their twenty second birthday those safety lines cut. It’s scary for the child, who at times doesn’t even know how to prepare for it or for the parents, not knowing what to do and watching those lines slowly being cut. If the supports could be extended, even if the child was to begin transition to another school this would be helpful for those children that aren’t ready and to be honest there may be children that will never be ready to leave their structured environment in school. . I hope one day there will be enough homes to support aged out children so that they can continue to grow and succeed or college-like schools they can attend so that they can continue after their twenty second birthday.

The bottom line is more funding needs to be given to the Autism scientific community to continue to grow and improve on techniques and medicines to help not cure but make their lives livable. To take this scary world and not make it so scary to them. To help with their anxieties without making them feel or look like zombies. These things seeming so unimportant others but would make a huge impact on the lives of these children and their families. With the added funding for the autism community in rural areas, our children will be more successful, more confident and have brighter futures. More funding would also give the families the needed support that is essential to making a successful environment for these children. It will also give the teachers and educational team the resources and training needed to offer the children in their classes what they need. Meeting the needs of children with autism and their families in rural areas would make life so much more livable.} else {