Autism Awareness Month begins on April 1st and ends on April 30th. Everyone around the country, in recognition of this are asked on April 1st to put a blue light on their front porch light. For those families affected by autism, there is no end or beginning date. They live and embrace the challenges of autism daily every day of the year.
This diagnosis is a on a spectrum so is not as clear cut as the news would have you believe. Autism is also not something fairly new. According to Bloomberg Business Report in 2014, it affects more than 3.5 million Americans, many of these are adults. The costs are monumental, creating a hardship for many families. Some support givers are unable to get the needed treatment for their loved ones if their insurance plans won’t allow it and if their state laws won’t cover all of the needed services. And the individual costs of care and education are astronomical. For an autistic child without any intellectual ability, the costs are estimated at 2.2 Million dollars and with the ability to function intellectually, the costs drop to 1.2 Million dollars per person.
There seems to be a misconception in society that autism only affects families that have an autistic child. Thus the issue has been continually disregarded by communities at large and not a popular political issue. However, even back in 2012 a study done by Autism Speaks published findings that it was costing our country over $137 billion on autism. Much of this cost was with adults with autism who are unable to get work or support themselves. Current costs are $175-196 billion dollars. If that figure is not astounding, note that the Autism Society Organization has found, in recent research, it will be over $200-400 billion to our nation in the next ten years.
There is a proven method to reduce the overall costs over the lifespan/care of autism. The critical key is early diagnosis and intervention (Autism Society Org.) Estimates are showing the reduction to be as much as 2/3’s of the total projected costs per individual. But, the early intervention will only work if parents are educated by being informed about autism, are proactive in testing and have school systems willing to work with children and parents. It is also reliant on funding being made available to families be it through insurance companies and/or legislation so that those with diagnoses can use whatever methods they need to obtain the therapies that best progress them to optimum performance.
I have been on the side lines and watched a family grow in knowledge, spirit and faith in this world. I do step in when I can but as a grandparent my role is limited to support system/cheerleader. As my son and daughter-in-law have been involved in this special class of children, I have known a higher level of pride in each of them.
Many of my followers know their story so I will stick to the highlights. Rebekah, my daughter-in-law, immediately felt something was amiss first with her middle child Ty and at age 2 set him up for testing. Her youngest child Jake, even though his development was going forward, she saw some signs that concerned her. Thus she set him up for the same testing at a hospital, those tests to determine if he had Autism. The two young boys had the diagnosis, different degrees, not identical but nonetheless, autism spectrum. Never one to hang their heads in sorrow, they both jumped on the bandwagon immediately.
Rebekah and my son Mike do what many of these families have to do, dig their feet into the ground and begin running. I can’t speak for them and I won’t try. First with Ty and then with Jake, they got the best therapy, trying one after another until they were satisfied with the progress the boys were making. This is a continual process for them, reviewing and evaluating that never stops. There is never time off, no vacation, no breaks. These boys are constantly learning and on routines, thus Rebekah’s job is hands on deck pretty much all the time!
In addition, both parents try to reach out and learn as much as they can in the field so they are abreast of all new information that is on the forefront. They want both of their children to have the advantage of whatever is out there. If it means extra-long days at the office for my son, he does it without hesitation. Sacrifice, large sacrifice, is what having autism in your household is about.
Rebekah continues networking with other mothers who have children on the spectrum. She does this for multiple reasons. It provides a mutually supportive system for her and other women. This also is a great learning tool for her and other moms. Many newly diagnosed children have mothers who don’t know where to go, how to cope, what to do. Mothers like Rebekah can get them started on the right path and let them know there is a rich full life ahead of them! She lets them know her boys are thriving. See, my grandsons are not missing out; she makes sure that their lives are full. They are the ‘American family’ with a few modifications.
However, the costs are great for autism to a household budget! Noone in their household complains but I have ran the numbers. Costs of treatment are staggering. Therapy is often one on one for autism thus, extremely expensive. When a parent makes a good income, the assistance level goes down. Thus, since my son is a professional, his assistance is limited. Out of pocket expenses add up quickly. And the amount of time my daughter-in-law spends taking children to and from treatment and meeting with therapists is monumental too. I hear parents complain about a parent-teacher conference. Two times a year for fifteen minutes. Oh, if Rebekah only had it that easy! She had to drop out of nursing school when attending on her GI Bill after serving in the Air Force because the children’s schedule was just too demanding for her to do anything but attend to the children. This is common place for autism. Many parents have only one parent working due to the demands of caring for a child and thus are limited to one income and one parent basically spending 24/7 providing around the clock care.
If you haven’t had children with autism you don’t know what it is like raising one. You may think you understand, you may comprehend the spectrum, the common nuances but living with it day in and day out is totally different. Ask the parents that have these children. They can give you a reality check. They are special too, make note of that. Yes, the children are blessed children but the parents are hand-picked also.
Celebrations in these homes are over the smaller things in life. Many of the accomplishments are the tasks mothers take for granted. Examples are a child dressing himself, a child potty-trained, and a boy speaking. Sometimes Ty ignores his birthday gifts preferring instead to simply jump on the trampoline in the backyard. Rebekah went for years without hearing her son, Ty say hername. Finally one day she heard “Mommy.” Not long after she heard “I love you.” And then it all comes together with a kiss preceding those words but her wait was long and hard to hear her little boy say something so little but yet something so special that every mother dreams of their little boy saying to them. Can you imagine waiting years to hear this?
When April rolls around, keep these children and adults in mind. Autism matters. My grandsons, all of these children and adults deserve attention. They were not asked to be born this way. God created them the way they are as he created you and I. Perhaps it was to test all of us to see if we would care. Can we go outside of ourselves and love other individuals who have a harder time dealing with the outside world than us?
If each of us could be more aware of any legislation that comes down the pike that promotes issues related to autism, it would make a difference. We need, as a society, more early interventions so children are diagnosed sooner. All children need coverage for the newest and greatest therapies that are out there and the means to obtain it. Our communities stand to benefit from these improvements. It is the right thing to do, thus, will you turn your light on and go blue?