Disclaimer: This blog contains research and information provided by Autism Speaks. However, I am not a representative of them or their organization. The information shared is based on their research studies or experienced by my family. Please take the information as is, it is not intended to per sway anyone to be pro Autism Speaks or anti Autism Speaks…. So your comments on the organization itself are not needed.
Autism: What have we LEARNED???
According to research completed by Autism Speaks, we as a nation have more knowledge regarding Autism now than we have ever had before. As a parent of a child with Autism this is great news….. although quite disturbing. WHY?? Because despite the efforts of many, Autism is still considered a non-curable diagnosis…. Is there treatment for Autism? YES!! Can you see improvements? Most definitely!! Do all the struggles end and it all just goes away…… Not really…..
The most alarming thing for me as a parent of a teen is that as my child gets older; his dad and I get older as well….. Meaning, that one day, hopefully a long time from now, my child will have to be cared for or at least “supervised” by some one other than myself and his father. We will be having to rely on a society who at this time sees him as possibly “damaged” or “less than”… As much as we push awareness, true ACCEPTANCE is still lacking and not just for people with Autism. Society often shuns those with disabilities or those who find themselves categorized as “different or not normal”. Children and adults just like my son are bullied, ignored, and cast away more often than not…..
Although the prevalence of autism disorders is great, many still regard it as something that doesn’t affect them. As you read the following information, I encourage you to consider these facts as if it were YOUR son or daughter. YOUR brother or sister, YOUR grandchild, YOUR niece or nephew, YOUR friend or neighbor….. How would you feel??
We Have we LEARNED…….
We Have LEARNED……. Autism Diagnosis is through the roof…… Ten years ago, the rate of autism in the U.S. was 1 out of 166. Today, it is 1 out of 68. I am not a mathematician by any stretch but anyone can see that this is at an alarming climb. AND….. According to research and the changes within the DSM-5 some children who would have once been diagnosed are no longer qualifying under new standards.
We Have LEARNED……. Autism can be reliably diagnosed by age two. As a parent, this is wonderful news….. IF …… And yes its a very big IF…., as a parent I am not in denial and I have sought out assistance in getting a diagnosis. If and when the parent is willing to take action and was seen in a timely manner- great things can occur……. As with any illness, diagnosis or plan, the earlier the intervention, the better chance of improvement.
We Have LEARNED……. One-third of children and adults with an autism diagnosis are considered nonverbal. Although this statistic represents my child, I fully anticipate he will be communicating exceedingly more in the future despite his age. With the creation of the IPad and the many advances in technology there is a plethra of techniques that can provide assistance in the areas of communication . We struggled for years to get Will to communicate only to discover that our ideas for the best means of communication wasn’t inline with his choices. I encourage every parent, teacher and therapist to “listen” to what the child doesn’t say….. He/She will show you the best means for communicating; Possibly an assistive communication device, sign language, real pictures, PECS (Picture Exchange Communication System) or some other means. We must not fall into thinking the “only” means of communicating is through “our preferred method”.
I am extremely proud to stand in agreement with a study funded by Autism Speaks which dispelled the belief that nonverbal children with autism, will remain nonverbal for life IF they are not speaking by the age five. As the mother of a 14 year old boy who has predominately been nonverbal since the age of 2; I can say that this is definitely true for us. Will has gained more language skills and is using verbal communication more since hitting puberty than he has in the last 10 years.
We Have LEARNED……. Autism often includes many other “issues” including medical all rolled into one. Many children on the spectrum experience seizures, some before puberty some with the onset after puberty. I have met few children with autism who do not have disturbed sleep patterns if they have sleep patterns at all. And to say that many have Gastrointestinal Issues is an understatement……. Children with Autism also present characteristics associated with Attention Deficit Disorders and Sensory Processing Disorder.
We Have LEARNED……. We ARE LOOKING for answers …. Extensive Research Continues…. Because of many organizations, laws, and mandates, research is continuing their search for answers…… They are finding answers in the DNA of children with autism…… The MSSNG project is changing lives through the genome sequencing of many families with children on the spectrum…. Research has also shown how environmental factors do play a role in autism….. Resesarch based on genetics is showing that non inherited influences on the development of the brain do indeed account for nearly HALF of a child’s risk at for autism.
We Have LEARNED……. Bullying continues to be problematic……. As many as two-thirds of children with autism are reported to have experienced some sort of bullying. Although with numerous programs, anti bullying projects and a variety of resources; bullying still remains a problem among those with autism, those with any type of special-needs and basically anyone who is perceived as different…… As a society, we may have come along way from where we were, but we still have a long way to go…..
We Have LEARNED……. That unlike most 21 year olds, 84% of adults with autism continue to live with their parents until death. As a parent, I have the same life expectancy as any other parent. Parenting autism does not cone with an extended warrenty… That is why parents like myself are advocating, pushing, begging and pleading for federal and state policies which would provide options and services within our communites for our adults with autism. My child deserves the same type of experiences and chanches as every other citizen of this great nation.
But in order to provide those experiences he must be taught accordingly…. Students with autism today- will be our future tomorrow……. and considering that almost half of those within the ages of 18 and 25 have never held a paying job, is a scary thought as to what “tomorrow” will look like. So what should we do??? Help support the initiatives, the laws, become informed, become involved! Parents like Kris and I need the assurance just like other parents that our children will be able to take care of themselves after we are gone….. Without an increase in vocational and post-secondary educational support for young adults with autism, without community services, without providers of these services, we have little hope of having that confidence for our child.
We Have LEARNED……. That children with autism continue to develop, get older and become teens, just like children without autism. Currently there are about 50,000 teens a year who “age out” of school-based services. Not because they dont need the services but because according to preset guidelines- autism is seen as “non repairable” after a certain, most ofter 12-13 years of age. That is why it is so important as parents and providers to fight for your kids services….. Dont give up hope…. Continue to seek out assistance to prepare your child and guide them through the transitioning years. As with any parent, our goal for our son is to provide him with the support he needs (whatever it takes) to successfully transition into adulthood and become a valued member of his community.
We Have LEARNED……. We will also be broke!!!! The average cost to raise a child with autism over their lifetime averages between $1.4 million to $2.4 million. This number is staggering… The financial toll it takes on a family is life altering. It affects communities, it affects cities and states, and it affects society…. Thankfully laws are being introduced like the recently passed ABLE act which will assist families with saving their money for long-term care for their special needs children tax-free. For more information on this newly passed act click here.
Ultimately what we as a nation have learned in the last 10 years is this…… Autism is REAL……. Its not going away…… It must be addressed…… Lawmakers, educators, communities and families have had their head in the sand or the hands in the air long enough. It is now time to stand…… Our future depends on it…,. My child depends on it and your child depends on it……… So I encourage you to consider……
What can I do with this information I have learned???? How can I help be a part of the SOLUTUON for the next generation……