I have had the honor of interacting with Linda Mastroianni of Canada for quite a long time. I perceive her as not only my cheerleader and inspiration, but a great friend as well. Through conversing and sharing successes and challenges regarding our sons it became evident that despite me being a U.S.A. resident and her being Canadian, our challenges are similar and span over the border.
I decided that it would be a wonderful idea to share our experiences and different talents to write an article that exemplifies the issues facing young people on the spectrum as they transition into adulthood. In doing so, our hope is to express the need for understanding, services, acceptance and more as children on the spectrum transition into the world of adulthood. I also hope a sense of awareness and unity is resultant from our collaboration effort and people understand that our issues are worldwide.
Thanks Linda for collaborating with me on this article. I am honored.
Autistic Children Grow Up To Be Autistic Adults By Mari Nosal M.Ed. CECE
As I observe my son who has Aspergers transition into adulthood and the challenges connected to this process, I am made keenly aware of a population who is in dire need of support. The adult’s on the autism spectrum. I am cognizant of the fact that the DSMV now groups Aspergers syndrome into a larger label that groups various levels of the spectrum together as autism spectrum disorder.
My personal conviction is that using the diagnostic label of Autism Spectrum disorder does a disservice to all children and adults on the spectrum as their individual issues and needs can get blurred. The issues and needs of an individual with classic autism are far removed from those of an individual with Aspergers. Hence, it is called a spectrum because there are so many variations of the syndrome.
I will refer to the spectrum as a syndrome not a disorder. A disorder connotes a car engine that is in need of repairs. My son does not need to be fixed. He merely needs support, compensatory strategies and acceptance within society to hone his skills and venture forth being him.
I also will not refer to my son as “my Aspie anymore than a parent who has a child with down syndrome as their “Downy”, Cerebral Palsy as their “C.P.” child and so on.. I believe this phrase connotes ownership and defines my son by his diagnosis, not his individuality. As he mentioned long ago, “Mom, my name is John (Name changed for anonymity) not Asperger’s”. Profound statement to live by I would say.
That said, children on the spectrum will all grow up and become adults on the spectrum. Services dwindle greatly as these kids grow up, age out of parents health insurance, social groups, occupational therapy and speech therapy. I am aware social groups etc. are available at the adult level but sadly they are next to nil.
Particularly higher functioning young adults graduate high school and are expected to fend for themselves. “You are smart they are told. You will do fine” True they are smart but hidden below the surface are challenges that hamper their transition to adulthood. These issues need to be dealt with and awareness needs to occur at the action level.
Intelligence is not all that is needed to venture into the world. Our children need to be equipped with supports not only in school but as they venture out and attempt to assimilate within the larger depths of society.
You see, Aspergers is not outgrown, nor curable. Individuals with Aspergers merely learn compensatory strategies as they grow and silently struggle daily with their difficulty communicating, working with, and living with the neurotypical population. Aspergers is a neurological disorder which affects many aspects of their daily lives. Because they tend to have normal to above normal I.Q.s, society perceives them as merely quirky loners.
The old phrase, “One cannot tell a book by it’s cover” is an appropriate analogy here. I can equate their issues with a cast. When one sees an individual with a cast, they know that individual has a broken bone. In regards to Aspergers, these individuals look like functioning neurotypicals on the exterior. I will now explain that is not the case.
Aspergians have issues, impairments with communication, appropriate behavior, and socialization, or assimilation in the neurotypical society if you will. Children with Asperger’s have excellent and advanced expressive language skills. (speaking to people) Aspergians have large vocabularies and are excellent at conveying data, information, what happened on a T.V. show, etc. i.e. factual information. They often have difficulty in reciprocal conversations.
Their difficulty conversing in social situations goes beyond a lack of interest. On the contraire, they silently wish that they could socialize better. I recall my son calling from college. He attempted to join groups because he wanted to fit in with other students. He attempted to join the Frisbee club, but impaired motor skills hampered that effort. He attempted to join in at parties but difficulties with reciprocal conversation squelched that effort.
My son called me at home making me aware of his efforts to fit in, have a girlfriend and more. He informed me of his efforts to make friends and socialize. My heart broke silently when he said, “Mom I try and try to fit in but it is not working, can you teach me?” I suggested he join the computer club and he responded by saying, I only like computers because I have nothing else. My computer is my only entertainment.
Aspergers creates havoc in terms of the individual’s ability to process information, strategize, and receive information. Hence: their difficulty with receptive language. (Processing and absorbing information) Reading body language and knowing how to respond when someone is sad, despondent, or distressed is difficult for Aspergians. I recall a gentleman telling me that he wished he new what to say or do when his wife was upset.
The man told me that it hurt him greatly because he wanted to say and do the right thing in such situations but did not know how.
Individuals with Aspergers are prone to sensory overload when presented with loud noises, strong odors, office environments where several conversations are going on simultaneously and parties where background music is playing while people attempt to converse with them. It is not uncommon for Aspergians to have tertiary anxiety disorders which rear their ugly face in situations mentioned in the latter paragraph. Aspergers is a neurological condition.
On the surface they tend to be academic prodigies in certain areas of academia. Hence: their nickname as children of the little professor. In reference to language skills, many aspergians speak in a concrete format and upon further review in a reciprocal conversation their sentences may be out of context. Due to receptive processing language deficits, many individuals have difficulty with being given more than several steps through the auditory modality at one time.
It is a misnomer that Aspergians do not warrant speech therapy. On the contrary, speech therapy can assist children in honing expressive language skills i.e. using descriptors, expressing emotions verbally, describing an experience like a trip to the zoo in more than rote terminology. Speech therapy can also assist children with deficits in sequencing. An example of sequencing would be verbally summarizing a story in sequential order.
Aspergians tend to struggle with fine and gross motor skill impairment due to neurological impairment. Pincer grip issues can cause issues with difficulty in cutting with scissors, tying shoes, and other fine motor skill tasks. Tasks such as bowling with one hand, midline issues, riding a bike, and climbing trees can prove difficult as well. Hand grip is generally weak and hampers ability in hang on to jungle gym rungs, etc. Hence they tend to be ostracized by their peers not only for their social deficits, but lack of athletic prowess as well. Thus, they may benefit from physical therapy.
Aspergians may commonly present with A.D.H.D., Non Verbal processing disorder, and other maladies. They may not appear to stim. Upon further observation however one will notice that many aspergians run their hands up and down a drinking cup, have feet or legs that are in constant motion, stretch arms bent at elbows while turning wrists, tap tables and feet, and whistle, to name a few. These may be used forms of mild stimming to release anxiety.
Aspergians tend to prefer simple foods void of mixed flavors when young. This is due to sensory overload from heightened taste buds. Simplified, a spaghetti sauce can put their taste buds into sensory overload. It is extremely common for Aspergians to have tactile sensitivities. As children, a scratchy tag or rough texture shirt can drive them to the point of sensory overload, which is resultant in an emotional meltdown. A rough shirt may feel like someone is scratching their back with fingernails.
Due to mind blindness and neurological delays in development that normally place them approximately four years behind their peers, children with Aspergers are prone to being bullied and ostracized. Cognitive behavior therapy may be productive in assisting children with developing emotional and social skills.
Please attempt to understand these children . Do not minimize nor assume that they go on to lead independent fulfilling lives. Many of these children grow up to be underemployed due to inept social skills. A college degree does not guarantee a decent job due to neurologically based social, and processing difficulties. Due to popular belief not every aspergian becomes an engineer or scientist. They are as diverse as you and I. In my sons case, he is advanced in English but struggles with math and he is an Aspergian.
The divorce rate is extremely high for Aspergians in relation to neurotypical couples. Some go through life having no romantic relationship or friends due to struggling with navigating the social maze. Without society’s assistance and a nationwide education program these children will not hone their wonderful talents.
We are all aware that identification of individuals on the autism spectrum has skyrocketed. The children being diagnosed become the future adults that will be members of our society. It is our duty to assist them in becoming the productive members that they and their parents wish them to be.
I am making a plea for better and more abundant high school level and adult services to ensure that our children become successful members of society. They do not disappear into thin air at age eighteen.
Lets assist them and ensure our children do not end up underemployed or unemployed due to misunderstanding and lack of assistance. Note the skills of individuals on the autism spectrum and not their deficits. Educate yourselves on this syndrome so you understand how they learn.
It is common for individuals to visit a foreign country and expect those individuals to speak English. When foreigners come to our country we expect them to speak English as well. This is a selfish perception to say the least.
In terms of individuals on the spectrum, the same societal mindset tends to apply. We expect them to be a round peg that fits into our metaphorical neurotypical round hole which is defined by our notions of normalcy and social mores.
As with foreign language, we must learn to work love and play side by side with a square peg and round hole. If neurotypicals expect aspergians to understand their perception of normalcy, we must learn to appreciate and accept theirs. It is a two way street.
My son is now 26. I have watched him struggle to pave his way to fit into a society that gives him no leeway. He has experienced underemployment despite a college degree. Through the years, my son has experienced bullying, being labeled as lazy, oppositional and more in school. Despite adversity, he continues to strive forward. Falling on his face, getting up and repeatedly moving forward.
He continues to develop on his time table and in his own way. His development may not be indicative of societal expectations but grow he does. We embrace him for who he is.
In closing, not all disabilities are visible to the naked eye. Not all individuals with disabilities have a wheel chair, a cane, braces on their legs and so on. Disabilities can be hidden from the naked eye.
That said, if you are an employer and notice an individual struggling, attempt to find out why. Do not merely make assumptions and fire them. If an individual does not make eye contact, small talk or fidgets during an interview, they may have Aspergers or a similar condition.
Look below the surface and I guarantee that you will find the most valuable and loyal employee, friend, or mate that exists.
I quote J D Salinger: “I wouldn’t even tell them grass is green. Colors are only names. I mean if you tell them grass is green, it makes them start expecting the grass to look a certain way — our way — instead of some other way that may be just as good, and maybe much better”
Mari Nosal M.Ed. CECE
I am a published author and focus on books pertaining to autism and Aspergers Syndrome. I have had special needs articles published in several magazines.
I have presented autism workshops to staff, management teams, and parent groups. I offer tips on curriculum development and behavior modification within the classroom and through in-services. I am certified by the Department of Early Childhood Education as a lead preschool teacher, an infant and toddler teacher, and site coordinator qualified to manage school age programs. I have recently ventured into public speaking engagements to educate both parents and educators on autism and Aspergers Syndrome
I want my experiences and challenges to be used productively as a learning tool for other parents and for educators as well. When my son was diagnosed with Asperger’s a decade ago it was a foreign word among many parents and professionals alike. I fought for help never giving up. Through my books I wish to help parents feel like they do not walk in the dark, that they are not alone, empower them and that there is light at the end of the tunnel. I also want to educate society at large on the topic of the autism spectrum. I believe all parties involved need to work as a collaborative team in order to insure a special needs child’s success.
I am a published author and focus on books pertaining to autism and Aspergers Syndrome. I have had special needs articles published in several magazines. I have been interviewed several times in print, on pod casts, and internet T.V. regarding the autism spectrum. I have presented autism workshops to staff, management teams, and parent groups. I offer tips on curriculum development and behavior modification within the classroom and through in-services. I am certified by the Department of Early Childhood Education as a lead preschool teacher, an infant and toddler teacher, and site coordinator qualified to manage school age programs. I have recently ventured into public speaking engagements to educate both parents and educators on autism and Aspergers Syndrome
I want my experiences and challenges to be used productively as a learning tool for other parents and for educators as well. When my son was diagnosed with Asperger’s a decade ago it was a foreign word among many parents and professionals alike. I fought for help never giving up. Through my books I wish to help parents feel like they do not walk in the dark, that they are not alone, empower them and that there is light at the end of the tunnel. I also want to educate society at large on the topic of the autism spectrum. I believe all parties involved need to work as a collaborative team in order to insure a special needs child’s Amazon.com at Mari Nosal : Please stop by my site at Amazon Books and check out my published books on autism aspergers special needs and more you like my articles, aside from being the parent of an adult with Aspergers Syndrome/ A.D.D and an educational professional, I am also a published author of many special needs and autism related books written to inspire and support parents, families, educators and society at large as well. Please stop by and check out my books on http://tinyurl.com/kdspqy9
Aging into adulthood with autism By Linda Mastroanni Certified Autism Life Coach
I’ve seen my son transition through many difficult situations in his young life. Many of them heightened to an incredible level of difficulty due to his autism. What many neurotypicals would describe as normal teenage experiences, for an autistic person like my son, these situations are far more complex for him to decipher and process.
He is now going through another very difficult transition, probably the most difficult one yet – the transition into adulthood. Aging out of the school system where he felt somewhat protected, and entering into the work force, into society’s den, is very disconcerting to him. He realizes that he needs support but is uncertain how or where to receive it.
His biggest obstacle at this moment is finding employment. He wants so desperately to work but so far every organization he submitted his resume to has either turned him down or not even replied back to his inquiry.
One placement agency refused to take his resume stating they cannot find work for him if he has never been previously employed. Really?! Isn’t that what placement agencies are for? How is one to start then?
Nobody is willing to give this young man a try. He is judged based on his first meeting – the interview with the prospective employer – one that he most surely cannot pass because of his autism.
The interview process, for many autistic people, is not only extremely difficult but almost always results in failure. Imagine how difficult this can be when every single challenge you have is presented right in front of you and you must overcome every single one while answering the question and maintaining positive engagement!
Having eye contact is extremely difficult for many autistic people and going through the interview process is all about eye contact and positive engagement. They are struggling with the eye contact, with the closeness of the person giving the interview, with the surroundings, with the sounds and with the unfamiliarity of this experience. They are desperately trying to get a handle on these challenging issues that are manifesting all at once that it makes it almost impossible to understand or even properly respond to the questions that are being asked.
My son does not always make eye contact and on the few occasions that he does he never maintains it. He will always look away even when he is answering a question. I have explained to him many times how important this is but he will always say that this is too difficult for him. “Why must I look at you for you to believe me that I understand? I hear you even when I don’t look at you. I can understand you even when I don’t look at you.”
This reality is not exclusive to my son. Many autistic people are living this exact same thing. They must conform to what society dictates as normal and they must do everything within their power to act and be “normal”.
While autistic adults may not have the same challenges as they did when they were children, they still face an enormous amount of obstacles on a daily basis. For my son, his biggest obstacle is the misconception that others have of him.
The reality is autistic children do become autistic adults. They age out of the school system where they had support and structure and are now ushered into society. They are expected to do this without support or resources because another reality check is that there isn’t any support or resources after 21.
Parents are left with the difficult task of knocking at government doors looking for any available programs for their adult son/daughter; asking friends if there is any job openings where they work; visiting their local retail stores and speaking with the manager hoping to convince him/her to hire their autistic son/daughter. Many times one parent has to quit their job to stay home in order to care for their child.
This dynamic is incredibly stressful for everyone involved and this is where change must occur. It is time we put our effort in providing proper resources and support for the autistic adults living in society that are fully capable of contributing back to the community. We must shift our focus towards implementation and integration into society and the work force instead of putting all of our energy in research and finding a cure.
One cannot outgrow autism, it doesn’t mysteriously disappear and they most certainly cannot be cured of it. Autism is very much a part of a person as the color of their eyes and the shape of their nose. It cannot be separated from them. However, autism does not define the person as a whole. There are so many different and special parts to every autistic person and when woven together, these exquisite pieces paint a most impressive human being; unique in their own right.
Autistic adults have every right to contribute to society. This means equal rights and equal access to employment. No discrimination based on their disability. I so dislike that word because autistic people are capable of so many things.
They are unfortunately judged unfairly and this leaves them without a job, without any programs to attend and literally with nothing to do. They are pushed aside because society doesn’t want to deal with “different”.
My son, as with many autistic adults, is judged for something he cannot change. He is judged for being who he is. He is not ashamed to be autistic but the treatment he receives from others clearly demonstrates to him just how much society is not accepting of those who are differently abled.
Indeed, this transition has and will continue to be a difficult one. All we can do is maintain a positive attitude, not give up, we keep pushing forward, he continues to submit his resumes and we pray for guidance. We hope for something positive to transpire and I so desperately hope he will find a job soon.
I am founder of http://www.SpeakingAutism.ca and contributing blogger for Huffington Post Canada.
I provide support, resources and information to families and individuals living with ASD. I am also a certified life coach specializing in autism, blended families, divorce and remarriage.
I have two sons with autism spectrum disorder and I have over 19 years’ experience with autism.
My unique background and personal experiences puts me in a very good position of understanding the challenges my clients face on a daily basis, as I have gone through many of the very same issues. When my son was diagnosed with autism almost 15 years ago, my world was turned upside down. There wasn’t nearly as much information back then as there is today. I felt alone and isolated.
Today I’m helping families so that they don’t feel isolated or overwhelmed. I want them to know that they are not alone.
I have been an active advocate for the education of special needs children that includes a well-developed IEP program. I have been part of the school governing board for many years and have attended and assisted in numerous IEP meetings.
I share with you my techniques to strive for a positive attitude, to live and not just survive and most importantly, show you how you can live and thrive with autism.