Autism is one of the most diagnosed mental health conditions, skyrocketing over the past few decades. Many are asking why. There are the misinformed who mistakenly believe that a now redacted, shameful attempt at connecting Autism with vaccinations was fact. Some still actually believe there is thimerisol (mercury) in vaccines. That was removed many years ago. In fact, genetic research has already started to uncover some of the causation of Autism development and there is quite a long way to go.
However, even with all of the current knowledge, *awareness* (which I see as a completely disjointed, poorly disseminated disaster) campaigns, specific inclusion laws with the ADA (Americans with Disabilities Act) ensuring that reasonable accommodations are in place, there is a storm coming. Hundreds of thousands of children will be or are now entering the workforce and employers are often at a loss at how to address the issue that truly is the elephant in the room: “How do we successfully train and employ individuals that often have extreme issues with social interaction in a world that demands the highest quality of service?” It is a very valid questions with repercussions for both employer and employee.
In today’s fast-paced world, people want their coffee, their sandwich, their refill NOW. They don’t want to wait. Sure, there are many kind and patient people out there who are not twenty minutes late to work or don’t have three hungry children in the car and are exhausted after working all day. However, for those with Autism, the one thing that they need to process all the different, incoming social events, time, is in short supply. There exists the conundrum. Not every person with Autism or other social challenges can wear a shirt that says, “Please be patient with me; I have Autism”. Some people are either oblivious to the fact, don’t care (don’t mean to be cruel, but it must be said), or don’t understand. This is why I don’t believe in the effectiveness of the term “Autism Awareness”. Sure, it exists for those who are raising children with Autism, or have family members, co-workers or other connections with this segment of the population. For most living with these issues, there is a profound isolation that is becoming crippling for many. Employers will need to rise to the challenge and add disability awareness training for everyone in order for the world to start understanding.
For the child with Autism, parent(s) have to often face incredible odds, years of diagnostic battles with schools, misdiagnosis and other hurdles before their child can even begin to be assessed properly. Untold thousands of children are still being given the standard ADHD diagnosis, given a bottle of pills and told to go home. For most parents, they accept this incorrect diagnosis, lament about the challenge they face and go home. The situation then morphs to where the medications sedate the child long enough to keep them focused in school, but then they come home or arrive with caregivers and become unhinged. Their misdiagnosis and unrecognized challenges with extreme sensory input deficiencies leave them lashing out at those who care for them, leaving them confused and wondering why “this isn’t working”. Still, the parents retain this unwavering faith in the system, and the child suffers for years with a misdiagnosis.
When these children start to grow up in the school system and in society, their crippling issues with social interaction can leave them isolated from friendships and other developmental milestones many take for granted. Many retire to their room, where they can shut out the *noise of the world* and create a quiet place where they can focus on their own preferences. A great deal of children with Autism are bullied, as I experienced first hand for years with my son and am now seeing bits and pieces of it with my teenage daughter.
However, one of the biggest issues that looms on the horizon, one many parents, including myself didn’t see at first, was the transition between leaving school and the adult world. The findings are NOT pretty. Not only are you and your child thrust into a world of uncertainty, there is not a lot of help out there that is easy to find. Sure, you will be handed pamphlets, suggested books, perhaps a list of agencies that can help etc, but for the most part, you will be on your own.
The statistics of the transitioning youth with Autism can be pretty bleak to read about. No one tells you about the letters that will show up saying that this service will be ending at the end of the month or that funding will discontinue for something else. It’s a minefield of terrifying discovery, compounded with hours upon end of phone calls, paperwork, faxing, panicking and wondering what will come next in the mail. Some people think it will all “work itself out”. NO IT WON’T. You will need to become a staunch advocate for your child. EVERY DAY. Even if they pass their exams for college or land a great job right out of school, it doesn’t end there.
Employers are slowly starting to come around when it comes to young adults with Autism. Colleges now have support services that are more comprehensive. While they can’t take into account the often heavily modified programs that leave Autistic children with high school diplomas and the Catch 22 of non-college level skills, there is a huge issue when it comes to children with Autism attending college. Many do, and they go on to receive degrees and have a great career. However, for many, they find themselves faced with college level material they don’t understand and a future they can’t picture. Many individuals give up the idea of college because they are too overwhelmed. Whether the issue is money, transportation, fear, a lack of proper educational competency at the comprehension level required, or a myriad of other reasons, some decide it’s just too much and walk away altogether.
Without advanced education, many young adults with Autism find themselves in the lower paid, customer service sector. Perhaps it will be fast food, or other low paid jobs. Instead of honing their skills in say, information technology, where they could pursue a rewarding career doing something they love, they are now relegated to a position that doesn’t pay them well, and requires them to utilize every bit of social interaction they struggle with continuously. This results in a host of problems. For someone who has Autism, that is very rarely the only issue the individual faces. Known as comorbidities, there is a very complex list of conditions that can exist alongside Autism and impact the individual in a thousand different ways, depending on what those issues are. Oftentimes, this is where the classic “ADHD” diagnosis comes in. Parents, the ones I mentioned earlier who were given the diagnosis and a bottle of pills, sometimes finally find out that their child all along has had Autism and the belief that ADHD was the only thing going on has crippled the child’s ability to function. This is why it is SO CRITICAL to not just accept what you are told. Many doctors are undereducated when it comes to Autism and will just toss the old standard ADHD diagnosis at parents because it can very often be a part of the Autism Spectrum Disorder, but is secondary to the other needs. This deep, early investigation when the child is young will go a long way towards helping them when they become young adults, but many parents are just satisfied with the ADHD and think that’s all they need to do. I fought for 5 YEARS to get my daughter properly diagnosed and it was worth the hundreds of hours I put in. Not only will the diagnosis change the way her education is structured, she will no longer be blindly thrown a bottle of pills and walk away. She now receives proper weekly therapy and has modifications at school, rather than pills*.
(*I’m NOT saying that medications aren’t sometimes necessary for ADHD, in many cases they are. However, they should be something considered way down the road. My opinions stem from a one hour visit to her first therapist, who decided within a half hour that pills were the answer. This is how much of the medical world views these diagnoses and parents are going along with it. I decided there was no way that enough was done to justify putting my child on a medication that would alter their brain function until they were given extreme vetting and complete neurological testing. For me, it was the only choice. Parents should not be put off by long waiting lists. Get on them, wait, it’s your child’s life, health, mental health and future at stake.)
There is no denying that there is a huge social isolation issue with children on the Autistic spectrum. Many people don’t realize that just having a part time job can be enough to make the individual completely, emotionally unable to continue social interaction beyond the job itself. Winding up in their room, or quietly watching TV are sometimes all the individual has left. Families who have spent enough time dealing with these challenges recognize it and let the person have their time, but in the end, you wish there was a way to integrate them more into a non-work related social world. That is another challenge for another day. Right now, I’m just trying to help the incredible challenge of helping my child get through a part time work shift dealing with people who don’t understand him. It’s a bigger challenge than most realize and until there is more education, *Autism Awareness* is just a slogan.