My son is not an autism success story.
There’s an interesting narrative going around that autism isn’t a disability, that individuals with autism have “different abilities.” In some cases, this rings true. However, the percentage of autistic people without these special gifts far outweighs the people who are fortunate enough to bear amazing talents.
I’m a mum to a 16-year-old young man named Trevor. He is on the lower end of the autism spectrum. His verbal communication is quite limited, he cannot tie his shoelaces and his main food staple is toast with butter, a side of cucumbers and maybe a slice of cheese on a good day. Trevor attends a special needs school and he’s an overall happy guy. He is a lovely boy if I do say so myself.
I browse the internet quite often. I follow a few autism accounts on Facebook and Instagram, and many post incredible videos and stories about autistic individuals with amazing talents or achievements.
One child I saw had a hidden talent for art and he now sells his paintings across the globe. Another had an incredible gift for gymnastics. One boy was able to build a replica of the Titanic made solely of Lego, while another has become a professional NASCAR driver. Not to mention the lovely young woman who was able to become the first openly autistic lawyer in the state of Florida.
Granted, all of these individuals have varying degrees of autism. Some non-verbal while others are obviously on the higher-functioning end of the autism spectrum.
But what about my son?
My son has little to no interest in art. His poor gross-motor skills prevent him from ever becoming the next gold medal Olympian, and he will not attend college after he completes high-school, so any dreams of becoming a lawyer, doctor, engineer are just that, dreams.
I know I may sound bitter to you, but I’m not. I have a tremendous amount of love for my son, I’m just a realist.
When Trevor was young, I worried about his future. My husband was always quick to point out that he would find his way. Here we are, ten years later and we’re no closer to discovering a hidden talent or passion.
While I do appreciate and even enjoy watching videos featuring autism success stories, more often than not, it’s not true to life.
Many autistic individuals struggle on a daily basis. They struggle to communicate. They struggle with daily self-care skills that you and I take for granted. Others struggle with severe anxiety and sensory processing issues which often lead to meltdowns. None of these traits and behaviours would make for an interesting and motivating video or quote about autism I suppose.
My point is that yes, it’s wonderful that these stories exist, but I’m concerned about the false hope these stories give autism families, particularly to those who have children who have been newly diagnosed with autism spectrum disorder.
Autism is a very complex disorder that can (not always) prevent an individual from leading a fulfilling life. Enough with the false hopes and glamourizing of autism. Let’s stop pretending that autism is a gift.
Author, Priya Kahn
Priya is a wife, mother and advertising executive in the UK. She has two children, one of whom is on the autism spectrum.
Good point. Just like the millions of neuro typical children who lead unremarkable lives. Some people rise very high, others don’t. Just tty to be as happy and content as you can without fretting over other peoples achievements. Also you dont always know the full story. The successful person who is feted at work but hasn’t had time for loved ones for years. We dont hear so much about those stories.
Thanks for sharing your story; I can understand your concerns about “autism success stories” perhaps giving unrealistic expectations to parents of children diagnosed with autism/Autistic Disorder or other ASDs. I do agree that not all children or adults with ASDs necessarily have an ability or skill far above the average person, however, I do believe that all children and adults have skills. To me, though, EVERY story about a child making ANY progress in any of their skills AT ALL, no matter how big or small, in a way is a “success story”.
I think that one can’t really predict how a young child, say 3-7/8 years old, and even older, will develop in the future. Personally I believe in the situation of a young child diagnosed with autism or other developmental condition or delay, slightly overly high expectations and hopes may be better than too low expectations, though if the child is nearing or is adult age and it is clear that he or she will need continued support then of course that needs to be considered. I am diagnosed with autism and when I was 4 and a half I had severe expressive language impairment/delay and moderate receptive language delay, but now as an adult my verbal comprehension is in the high average range. I am not saying this to invalidate the fact that some children with language delay may still have severe difficulties with receptive and/or expressive language as and adult but to point out that it is possible for children’s skills and abilities to change and for certain skills to greatly improve, and that no human can really predict how a child, especially a young one, will develop in the future. Also, from personal experience, some professionals may give the parents a sense of expectations for the child’s future that may be too low (I can imagine that on the other hand sometimes too high), but in all respect to the professionals they may not always be entirely accurate.
Your child may not have any interest in art, that’s okay, does he have any interest in anything else (not just for his skills to develop, but also so he has something to enjoy)? Has any of his skills, whether his weaker or stronger ones, improved at all throughout his lifetime? If so, to me that’s something. Personally I think though, while skill development is important, even more important is being able to take care, nurture, and guide your son in the way he needs, taking into account his relative strengths as well as his condition and greater challenges. From this article I gather that there are challenges associated with your son’s autism, and I agree that needs to be acknowledged.
Finally, I believe that comparison of one child’s development to that particular child’s previous development may be more valuable than comparing that child’s development to another child’s development.
Amazing Post. I think the realism by which you approach this is very much needed. This is missing from lot’s of mainstream Autism discussions. It’s also absent from the entertainment world with shows focusing on high functioning types. My son is similar in certain ways to yours. I would say though that the word and issues of gifting and autism are so complex. There are some ways that his autism has not been a gift. Still in others ways it has. In some ways even further it has perhaps been a gift to us and not him or vice versa, certain things giving him joy but perhaps not u.. My son gets a special type of focus and love from me. I love my other kids, but there is a a dominant obsession I have with Lukah. I believe he has enjoyed this very much. For me it has made my life a whole lot better. Before the diagnosis many things that I was doing was just following the motions in life to please others. I just do not have the energy for that anymore. His diagnosis and subsequent changes gave me a cerebral selfishness to me that actually saved my life. I also get special focus and attention from him. he is very affectionate and has a unique sensitivity and warmth with things likes hugs and kisses. This a gift to me. There is also an innocence and simplicity to him. This is not always a gift for him. Sometimes it can be very dangerous. But most of the time it has been a gift to us. There are other things which will never be a gift to us or him. He is vulnerable in many ways that a kid his age at 7 just should not be. Its heart breaking. Always will be. That being said though I long for some freedoms parents with no autism in the house have, deep down I pity them, because they do not know Lukah, and if they did there lives would have been more whole. Im not sure where I am going with this but I would say a simple statement that autism is or isn’t a gift both quite don’t tell the whole story. For me its like a car accident that took away my legs.A horrific turn of events only later to find out my legs were full of poison and were eventually gonna contaminate my whole body. Could I have came to that realization without the accident? Probably but thats now it worked out for me. Autism is pretty messed up. Lukah is not and he even transcends autism, something that parents of kids who slowly regressed know even more. Thanks for you post helped me think about some things.
Hi, while I am on the higher-functioning end of the Autism Spectrum, I have to agree with you that this side of Autism is one that is not often portrayed in the media. We need more stories like yours.
I understand you want to paint a realistic picture of let’s say High or Low Functioning Autism and whatnot, but at the same time, the lack of optimism I find can be a little bit irritating. I know for sure as a person, I am suffering a lot of growing pains myself because now, I gave Community College a 2nd Chance and finished General Ed Credits with a 3.5-3.6 GPA. I am also trying to push myself to become really as socially ahead as I possibly can. Also, I am trying to force myself too seeking a path to “normalcy” by saying that I need to have a “set” path for life, but at the same time, my parents keep on telling me “ohhhhh, focus on now” and settle for nothing on the basis of a “serious career’ and be okay with doing a job your overqualified with for the rest of your life. I have moved on from that stage where I don’t want to settle for less and have what is called meaning and purpose in life!
Your kids may be in a situation where it may seem like the end of the world for you, but remember, never give up. Also, my recommendation is if you want to take your kids to sports practices or flute lessons, make sure you specifically talk to the instructors that they need to completely adjust their attitudes when they are dealing with your son/daughter. This means, the instructors cannot give your kids a hard time or give them shit. Tell them to be polite when communicating with your children.
Also be aware of who your kids surround yourselves with. Some of the “non-neurotypical” kids that they hang out with can be extremely toxic. Also, do not push this mindset that they have to have “so-called” friends who are at the same time, manipulating them, making them tired and feeling helpless. I would rather be able to find them some people who they can learn proper behaviors from, but at the same time, in order to deal with the neurotypical kids, you should teach your kids to force themselves to be interested in what their classmates are interested in. Because sometimes it is hard for people with Autism, even the most high functioning forms, to pull this task off, and have a broad amount of interests, but recommending your kids to do this will be good in the long run. Like learn what is going on with sports, video games, skateboarding, surfing, movies, TV Shows, etc. So, do yourselves a favor and try to make sure your kids are surrounded by other kids that can help them grow and tell those kids what your kids are going through, so they can understand. Don’t force your kids to hang out with kids who misbehave, please! I got myself into trouble as a younger kid because as I hung out with people who misbehaved, I was not able to learn the proper behaviors, I would talk back to authority figures, and sometimes, I wound up in situations where I had so-called “friends” who were too emotionally hard to handle and my naive parents thought these emotionally too hard to deal with people were nice people due to how they were good at fooling people. So I would stress that you need to not have this too nice mentality with who your kids hang out with or even who your daughter or son dates.
Another thing would be for kids is to send them to Social Skills training programs ran by Psych Researchers at universities, that will be a great help too.
I understand that you guys have a tough uphill challenge under your belt. But remember my words and also do not forget that your kids can indeed live a comfortable lifestyle and I would recommend dumping the “end of the world” or “doomsday” mindsets lingering around nowadays. I am just about to really feel I am entering the world of “normalcy” and I still have a bit to learn. So far I accomplished getting a 3.5-3.6 GPA in my classes at my New Community College and am applying to undergrad schools and will hopefully keep up the good work and after, find “my calling” and my “meaning” in life eventually.