By Mari Nosal M.Ed., CECE
As Fall approaches, the signs of transition from summer to Fall appear. The outdoor temperature becomes cooler and we wistfully ponder trading flip flops, shorts, and trips to the beach for bare trees, winter coats, snow shovels and boots. Transition is a word that can send a chill through the soul of a parent who has a special needs child aging out of the system. The thought of them preparing to enter the world of the unknown can send shivers through our bones.
The world of adulthood. It is a milestone that resonates with any parent whose child has or is preparing to leave the cocoon of supports and services offered to them in childhood. As with changing seasons, we must be equipped with proper support in order to survive. In order to physically survive the transition of seasons, we must possess supportive items such as heat and winter coats to function at a healthy level. In order to survive the transition through life, we must have the support of a village. A societal village of sorts’ that is necessary for successful transitioning. As one would not venture out into a chilly day without proper gear to keep them warm, a supportive metaphorical village is required, as our children venture into an unknown world called adulthood, to assist them in achieving successful assimilation, mastery and independence.
Suddenly, I.E.P. ‘s , the I.D.E.A. laws that ensure a child educational rights and support services do not pertain to them anymore. Children who do not qualify for disability age out of parents’ insurance. The child who received supports in school is sent out into the stage of transition to fend for themselves upon graduation. It is akin to providing no safety harness and asking a child and their family to scale Mount Everest. Children who possess average or above average intelligence leave school with no support groups, transitional services and with a mere “good luck, you will do fine”.
Unfortunately, this is the norm for transitioning teens and young adults. True, many strides have been made in the past decade. The recognition that Aspergians have receptive and pragmatic speech deficits (although their expressive vocabulary appears large) has fueled the development of speech therapy programs for children.
I am thrilled that children are identified with Asperger’s syndrome and high functioning forms of autism now at much earlier ages. Through earlier intervention, these children will be equipped with better developed compensatory strategies in preparation for when they are older. At such a young age their synapses are much more malleable as well.
One thing has not changed however since my son was diagnosed with Asperger’s syndrome. The support for transitioning teens and young adults aging out of the system is minuscule to say the least. After years spent fighting and advocating for services and receiving supports, the cocoon of support is gone. The game plan changes, the cocoon opens up and your child emerges as a metaphorical butterfly who must spread their wings.
As transition to adulthood occurs, you must attempt to leave the childhood supports and start researching and advocating for new services. It is enough to cause a parent to pull out their hair until they are bald and babble incomprehensibly while displaying a whole body-encompassing motor tick.
During this time period, remember how being proactive propelled you to advocate for services when your child was young. This may assist you in mustering up the energy to experience it again at the adult level. You did it before, you can do it again. The difference is that you will not or should not be the only advocate. You must teach your adult or soon to be adult child to self advocate by your side while modeling. AVANTI… moving forward from childhood to adult goals.
Diagnosis and programs for higher functioning individuals on the spectrum that promote earlier identification, social, remediated and compensatory skills programs have blossomed over the last decade for sure. Unfortunately, the majority are for children. This is a great boon as higher functioning individuals on the spectrum used to remain unidentified throughout life culminating in not living their lives to their full potential.
I surmise that because diagnosis generally occurs in childhood, autism is associated with children. But, autistic children become autistic adults. With the increase in identification we are about to have an influx of adults that have already reached the age of consent who will and are in need of services. When individuals on the spectrum become adults, a large hole does not merely open up in the ground, engulfing them so they disappear from the face of the earth. They are our children, spouses, co – workers and friends who exist side by side within society by neurotypicals.
The majority of individuals on the autism spectrum take longer to develop socially, emotionally, neurologically and biologically then typically developing peers. They may turn the magic age of eighteen and age out of programs and services but their mind and body may be a 1/2 decade or more behind that chronological age. It is my assessment that it is economically feasible to offer programs for people on the spectrum and their families throughout their lifespan versus the societal and emotion costs incurred from a lack of intervention.
Kids transitioning into adulthood with no transitional supports whatsoever may doom them to a life of homelessness, dependence on families, self medication i.e. alcohol and drugs, leading a life where they do not even come close to achieving goals in life that they possess the capabilities for. My statement may sound dire but working in the substance abuse field in the past, many individuals were found to be self medicating due to undiagnosed mental health issues and learning disabilities. When identification occurred and supports were in place (ie counseling, support groups etc) the success rate of staying drug or alcohol free skyrocketed. In my opinion, this is a win win situation for all.
The positive outcome of offering training and supports is a society not strained by criminal recidivism, underemployed people on the autism spectrum, and individuals who require public assistance due to being poorly equipped to function in the adult world. With the right interventions, individuals will become independent adults who instead contribute to society as proud tax payers We have a wide and vast group of widely diagnosed individuals who are about to enter adulthood. Sadly, the present state of affairs has caused some parents with transitional kids and older on the spectrum to stop working and teach the skills to the best of their abilities to their kids that society does not offer.
Autism Speaks funded research in 2014. It found that adults on the spectrum who have jobs that encourage independence showed a greater sense of self esteem and increase in positive behaviors, skills, and activities of daily living. Unfortunately, without skills, training, and support, finding sustainable employment for people on the spectrum is not an easy task. A 2012 study in the journal of pediatrics found that, seven years after graduating from high school, one in three young adults on the spectrum had no college education, vocational education, or paid job experience.
Society, autistic children do become autistic adults. From transitional programs in high school for kids who fall between the cracks and do not qualify for birth to 21 programs, to supplying family transitional support, mentors, job coaches, social groups and everything in between- we must be ready for the influx of young people who need societies help
We have two options, we can open our eyes to the struggles of adults on the spectrum, create and fund programs that ensure their success present and future. Or, we can continue to keep blind eyes and backs turned on a vulnerable population who requires assistance and deal with the consequences.
My perspective is that PREVENTION is always paramount versus REMEDIATION. Quoting Plato: “To live with indifference is to live with evil men” or in modern gender neutral speak- evil people. Will society be part of the success or the failure of families and people on the spectrum? The answer is up to you. Every human being has a right to have their challenges recognized and gain assistance so they can transition into independent, socially successful individuals. In the end, they need you, society at large to show them that you care enough to assist them. Society has changed. Diagnostic techniques are readily available as never before. behavioral interventions and larger knowledge bases for implementing and individualizing compensatory strategies are prevalent as never before. Perhaps it is time to redefine the descriptors for developmental disabilities as well.
The knowledge and services are available in theory. In terms of individuals with Asperger’s and high functioning autism, recognition is lagging far behind however. Without acknowledgment and identification for this population who greatly need support and understanding, if the services are not available for them that is akin to possessing a can of beans when we have no can opener. Without the can opener, the can of beans can not be opened. Society, YOU must be the metaphorical can opener.
.This article originally was published here. Reprinted with the author’s kind permission.
NOTE FROM MARI- Are you looking for a book that explains how to interact/understand the needs of kids on spectrum? I believe that my book written by me, a special needs parent/educator who has actually walked down the special needs path both as a parent and an educator? It was written from the passion developed from my experiences as a parent wading through the challenges of bringing up kids who are wired differently and my experience in classrooms I am the parent of an adult son with a late DX of Aspergers and earlier diagnosis of ADD/Anxiety. My family has experienced learning disabilities, medical challenges and more. I have certainly walked the walk of a special needs parent and still do. My goal is to light the path for parents who feel as though they are alone and walking down a dark path. There is a LIGHT at the end of the tunnel and my goal is to supply you with some inspiration while educating society in a collaborative manner as well. Check out my book 10 Commandments Of Interacting With Kids On The #Autism Spectrum. Written from the heart with a passion to make a small dent in society with the ultimate goal of increasing tolerance and acceptance of those with different needs. May we all one day, ALL live, love, laugh, play and work together in a society void of judgment and filled with acceptance and understanding for our fellow human beings.
Check out ten of my thirty commandments for autism posted on the national ARC website by AUTISM NOW :Ten Commandments of Parents with Kids on the Autism Spectrum https://shar.es/1wldwF via @sharethis
If you enjoy the sampling of commandments for the autism spectrum. You are most welcome to stop by my Amazon book website to check out my five star reviews and have a free preview of my books.http://lnkd.in/dcXbMjH