My son Samuel was diagnosed with autism at 28 months old. He was mostly non-verbal, except for when he scripted his favorite movie lines or spelled out letters he saw on signs. He had no meaningful communication and he screamed a lot. He repeatedly banged his head on the floor when he had meltdowns. He slowly cut back on the foods he willingly ate until eventually, he only ate goldfish and applesauce. He screamed in people’s faces when they greeted him at church. He had very little eye contact. He didn’t follow simple directions or listen to me when I told him to “come here.” He lined up his toys and would scream if they fell over or if he could not get them to stand exactly where he wanted them.
Sam is nine years old now. He is mainstreamed into his 4th grade class at school. He just graduated out of group speech therapy. He is very verbal. Sometimes, a little too verbal. He has meaningful communication. He can tell me what he wants and he can use manners to do it (though whether or not he uses them is a different issue altogether.) He uses sarcasm and tells jokes. He yells at his brothers and tries to tell them what to do. He can maintain eye contact for longer than two seconds. He is mostly able to respond appropriately to people when they greet him at church – at least he doesn’t scream in their faces anymore. He eats just about every fruit known to man and has a broader palate than his 7-yr old brother who is not on the spectrum, but still only has three foods he willingly eats. He follows simple directions and obeys me about as often as my typical 11-yr old son. He is now what most people would consider “high functioning” on the autism spectrum. He has come so far.
Yet, sometimes I actually feel guilty about his progress.
I have friends who have gone through the same therapy programs Samuel went through; some of them even had the same therapy longer than he did. But their kids are still non-verbal with zero eye contact. They still require 24/7 supervision and some are still in isolated special-ed classes at school.
Guilt.
A few days ago, I was heading to Capitol Hill to lobby for Autism Speaks’ Light It Up Blue Initiative. When I arrived at the metro station, I saw who I assumed were a father and son standing together. The young man, probably in his early 20’s, was excitedly flapping his hands and toe-walking. After loading my metro card, I looked over and caught the father’s eye. I smiled, and then I looked at his son and smiled bigger. Then I felt weird for looking and smiling so much, so I walked over to chat. I awkwardly explained that I didn’t mean to stare, but that I also had a son with autism. He confirmed that his son was indeed autistic and introduced me to him. He told me he was non-verbal, but that he understood everything that he heard. I shook his son’s hand and said hello as he took all of the DC metro maps and brochures out of the holders and handed them to his father. He explained it was his son’s job to refill the brochures at the metro station. He asked me about my son – how old he was, about his school, and asked if he was verbal, etc, trying to determine his level of functionality. As I gave him Sam’s stats, so to speak, I suddenly felt myself feeling embarrassed to report that he was verbal and mainstreamed in school. He was very kind and responded excitedly, “That’s so great!” I nodded, complimented his son on his job and that it was nice to meet them as we exchanged good-bye’s before heading up the escalator to the train.
I know that the last thing we special-needs parents want is for people to feel sorry for our children and their challenges. That’s what we’re trying to move away from with all the awareness efforts for various disabilities. We all love our children and we delight in their abilities, regardless of how limited they may be. Special-needs parents have a certain unspoken understanding between each other when we recognize each other in public, even as strangers. We smile because we know a little bit about the life that mom or dad is living with their child who exhibits similar behaviors our own children have shown. We smile because we secretly rejoice with that family who’s adult son has a job refilling brochures at the metro station. We give a nod of empathy if we see a child have a meltdown in aisle 7 of the grocery store because we get it.
Still, somehow, when asked to describe my special-needs child’s abilities to a father with a special-needs son who is non-verbal, despite his wide smile and dedication to his job, I felt bad. I don’t know Sam’s future. I don’t know what kind of job he’ll be able to get and/or hold, with or without me literally by his side as he works. But Sam has abilities this sweet young man does not – and may never have – and I felt guilty because of it. And then I felt guilty for feeling guilty!
I think sometimes we feel as if parenting a special-needs child automatically entered us into a competition with each other for “who has the harder life” in which none of us want to participate. And the winner of the competition is whoever struggles the most. But who judges that? So without a judge, and without standards to measure struggles, we end up in a constant mental judgement of sorts, by which we measure the challenges we face in our own life and compare them to the challenges of those around us. So if your child is doing well, according to how he/she is perceived by others, you are actually losing. Except once again, we go against our own awareness efforts because our judgements are based on what we see. And we all know that’s against the rules.
No one can win a competition that doesn’t exist.
I don’t think any of us want to be in this competition. None of us want to feel guilty for the 
progress our children have made, or the abilities they now have that are either gifted to them by the grace of God or earned through tearful, tireless hours – even years – of therapy. Each of us, and each of our children, face our own challenges. Those challenges are no less valid than anyone else’s. They are different, but not less. They say to understand a person’s life, “walk a mile in his shoes.” On the special-needs journey, we are all wearing shoes. But the shoes we all wear differ from one another. Some of us are even wearing shoes that don’t match. And that’s okay.Â
Because of the shoes we wear, we can understand how much work it took for a child to get where he is today because we have done the same hard work ourselves. We know all about the autism spectrum, which means all kids are not necessarily going to function in the same ways despite experiencing the same treatment. Maybe your child did not progress as much or as quickly as other kids, but it does not negate the progress they have made in other areas; nor does it devalue them in any way just because they can’t do the same things that another special-needs child can.
I love the title of Stephanie Hubach’s book, “Same Lake, Different Boat.” Using the same metaphor to apply to all special-needs families, we are all in the same lake, but different boats. Some of us have canoes with oars, and others have sails on our boats. But in the end, it’s not about “better” or “worse”, just different. No one is “less.” No one is “more.” No one can win a competition that doesn’t exist. We all have equal value in the eyes of our Creator, who has created us all differently. And regardless of the abilities of any person with special-needs, we can all rejoice in those abilities… together, mismatched shoes and all.
Thank you for writing this. I have special needs twins. They are not on the spectrum and so often I have felt this kind of guilt. My girls are functioning somewhere around a fourth grade level, then are very verbal at home, but not out in public. So we don’t deal with a lot of the issues parents with kids on the spectrum do. How often I have felt bad that I get hugs and smiles all the things that some parents would love to have.
What a great post!
At work, I was totally winning the “My Life is the Worst” contest, until someone at work’s child died. A really horrible death that still makes me go pale to think about it.
I don’t play that game anymore. I don’t even want to play that game anymore. I am glad that you have the maturity to realize that, unlike me, who figured it out the Really Hard way.
And I love your reference to “Same Lake. Different Boat.” Even if it is not original with you, it is a spot on analogy of a complicated situation.
I’m glad I read your post today! And I am truly happy that Sam is making progress! Yay!! It’s okay to be happy and to be proud of Sam and all your sons. Someday, we will all be healed together in Heaven. Then ….Same lake. Different mansions. Same God. 🙂 🙂 🙂
Thanks for this post, Sarah. It’s so hard to escape the comparison trap. You are right: no one can win a competition that doesn’t exist. Understanding that every child, every parent, every family is different can be so helpful.
My daughter is autistic. High functoning. Fully verbal, although still echoes a lot but can hold a conversation. She’s 8. She’s also in a contained autism class with 8 other kids and 3 adults because she can’t handle 20 to 1 class ratio. Many times she can “pass” as a neurotypical kid until something set her off and she can’t anymore. I don’t feel like she’s “disabled enough” for us to fit in the special need community, but she definately doesn’t fit in seamlessly with the neurotypical community either..
This is a fantastic and truthful article. Thank you for being so honest. I have a son with a very rare genetic condition who was born with severe hydrocephalus, adducted thumbs, cortical vision imparement, and an unrelated soft cleft palate. Even for a child born with this genetic condition, he is considered severe. He is in a specially built wheelchair for added support. He is non verbal, but fully understanding, and cannot eat anything beyond puréed foods. He spends more time in therapy of some form than learning his abc’s.
On the other hand, he lights up a room when he enters. He almost always has a smile on his face and he truly loves his friends and looks forward to school and other common activities.
I get the sympathy looks and big good for you smiles from so many people, including his classmates parents. I try to let them know that we are fine, and they do not need to feel guilty. I love celebrating their child’s accomplishments with them. Many of his friends were non walkers and non talkers when they all met in preschool. I look forward to having them help push my sons wheelchair on the field trips and hearing about their weekends.
All of you parents who see the parents like me, please do not ever feel guilty. Celebrate with us. We love the inspiriration and at times need the celebrations.
Hello, Thank you for writing this! I have 4 children and both my boys have autism. My older son (12) was classic, non verbal, etc. when he was 3. My now 10 year old was typically developing until about 18 months and then he regressed. Now? My 12 year old is high functioning, verbal, social (with challenges) and just wonderful. My 10 year old is in the moderate category for autism and super-severe in behavior. It is so hard. And they had the same therapies, but their forms of autism are so different. It’s easy to feel guilty like maybe I didn’t do as much for my 10 year old and somehow it’s my fault that he isn’t progressing as quickly. But the truth is? We are all different. it doesn’t matter what I did or didn’t do because really, he’s God’s child and God is caring for him even more than me. He has just as important of a purpose in this life as my older son, and my neuro-typical girls. It is such a baffling disorder, but God is never baffled.
I agree that it is difficult not to get into the comparison. At age three, my (now) six year old was much like your son at age 28 months-mostly non-verbal, banging his head off the floor, etc. He has also come very far. I am glad that despite the guilt that you continue to share your sons progress, it offers hope. When my son was in the days of head-banging, tantruming, extreme sensory related issues, I would have loved to have someone tell me: “Look it can and often does get better.” Even knowing that every child is different and there a no guarantees, it would have offered hope. In the autism journey (especially right after diagnosis), it can be very hard to find hope. So thank you again for sharing your journey!
I am kind of torn on this article I as an autistic do understand your feelings of quilt but from a very different angle, the issue is the guilt you feel is rooted in a form of ableism, realize it or not you feel guilty because part of you views the nonverbal indavidual as less, this isn’t your fualt its a cultural message, it is deeply ingrained in our culture. It very clearly is one set by organizations like Autism speaks so it is one you are likely exposed to regularly if you are supporting them,please don’t take these as an attack or an insult on you, there is a huge push in the autistic community for accoetance understanding and promotion of neurodiversity, the message of neurodiversity is “our brains are wired differently, yes we are disabled and need accomidations to reach our goals or to function and that’s ok, we still matter we are still valuable as people and we deserve our human rights and to be treated with the same respect and dignity as everyone else. I would encourage you to check it out some, books like neurotribes and typed words loud voices are a good place to start, also blogs such as emmas hope book and oarting autistic children with love an acceptance . I would also strongly encourage you to check out the boycott autism speaks movement and many autistics and our families are boycotting them because of the harm they have done.
As I said before I do understand your guilt but from a diffrent angle, when your autistic, especially with promting the boycott of autism speaks or promoting acceptance of autism any skills you have gained over time are used to silence you, “your to high functioning” “your to mild you can type”. “Joe John my son/brother/cousin what have you is really severe he has real autism” ” your doing well you don’t know what real autism is like” phrases like these are used at autistics all the time to silence us, no matter how impaired we actually are, so we too are taught to self internalize guilt for gaining skills, it’s really hard to hear parents say “what I would give to have my child communicate” because all to often they will also be the ones telling someone online they perceive as “not being severe enough” that they don’t know what real autism is and so on essentially taking the voice away from another autistic because the talk of acceptance of autism is unwelcome,
These are just a few examples and when I am more awake I might write a clearer and better comment
My kiddo has spd…I see in him aspie, and autism traits. When he was a toddler his behaviors were super challenging….now that he’s in 7th grade — mainstreamed with support from his IEP….. His vocabulary is extensive…. Sigh. But his social skills are still below….what I would like to see.
Same lake different boats fits us.
My kiddo was in big Church the other day, he was greeted by someone who used to work with him one on one…..my kiddo had no recollection of this person… Sigh it works for us to straddle the line between special needs…and somewhat neuro typical. Yup…I have the guilt that we don’t belong in either boat….
I feel uncomfortable with the word autism….but sometimes it’s a descriptive term that works for the behavior\situation…
My kiddo is left handed …. I’m right handed… And we both have social skills that aren’t fully developed…. 🙂 I try to grant grace to those who need it… And I hope that I would also be granted grace…when I am in need.
Thank you so much for sharing part of your journey from the “inside autism” perspective. My 20 year old son on the Spectrum (PDD-NOS/Atypical Autism) has come a very long way in his own journey. He still struggles to express himself verbally & in written form. It’s hardest (seemingly, from my perspective) for him to be aware of what is going on around him when he wants to jump in verbally. It’s also still very hard for him to give his listeners some type of “context” about what’s in his head and on his lips. It’s so much easier for us “regular” people to understand some unusual verbiage if he first says something like “this is one of my favorite 3 Stooges scenes when Curly says” and THEN he says the unusual/funny thing he wanted to share. Learning about the “two-way street” of communication (message sent AND message received) is still a struggle. However, I’m so glad that he is now choosing to share his thoughts and feelings more than ever…and I’m so thankful that YOU shared from your heart too!
My son shares about his experiences, and lots of praise for the Lord, at:
http://www.carepages.com/carepages/JosiahTheOvercomer
I write about his complex journey here:
http://www.carepages.com/carepages/JournalingForTheJazzman
May God continue to guide and direct your footsteps and give you many more opportunities to share from your heart with an often heartless world.
In Christ,
Valerie Curren
Mom of 4, 3 with ADHD, 1 with Autism & many complex health & other needs…
I agree. There’s the guilt you describe and the guilt about comparing my son with others not as “high functioning”, and the guilt for not really wanting to be too long with those not “functioning” as highly… It reminds me of what could have been and that there’s still much left to do with my son. It’s also the guilt of knowing (and being so happy about) that he doesn’t have the “look” of the others and most don’t even realize he has special needs… It never ends. I guess I can only focus on the positive side…
I’m so glad you said this “out loud”. I’ve felt this for many years. Reticent to share our story for fear of making someone feel badly that their child is not as “high functioning”. I would occasionally purposely look for people who were even more high functioning to try to rid myself of guilt. Weird.
And Stephanie Hubach is a friend of mine. I met her thru EMILY Colson.
I completely understand. But your story is YOUR story and no one else’s. And you have every right to share your story for what it is. Not compared to anyone else’s. I’m only friends with Stephanie and Emily on FB. I’d love to meet her and Emily both in person some day.