At our son’s school evaluation in October, they told us he has Asperger’s syndrome. It wasn’t shocking news (we’ve had the question in our minds for over a year), but it did shock us. I don’t know who is ever ready to hear it. But the big question, now that we know, is which people do we tell about it? And by “people,” I mean close friends, acquaintance friends, his Sunday school teachers, babysitters, coworkers, or even strangers we meet at the park. We’ve told family, but so far, that’s nearly it.
Buki is three years old. In many ways he is indistinguishable from his peers. Kids this age display a variety of behaviors, and toddlers develop at different rates, so Buki fits right in most of the time. He is very verbal, he’s friendly, and he doesn’t have a lot of freakouts in public. (He saves those for when we’re home.)
So if we don’t tell people, they really aren’t going to notice. Some autism families don’t really have a choice in this regard. If their child is nonverbal or has other visible symptoms, then people already know that something is different. They still don’t have to explain the situation if they don’t want to, but they can’t avoid people noticing
On one hand, I feel as though it’s his life, so he should be the one who decides (when he’s older, of course) who gets to know about this thing that puts a permanent label on him. It doesn’t seem fair that others around him know he has a label before he even does.
And so many people don’t really know what autism or Asperger’s syndrome is. Or maybe they’ve heard some false information about it or hear the word “autism” and have Rainman or some other outdated stereotype in their mind. It seems unfair to my son to color other people’s view of him simply by using the word autism.
But on the other hand. As a parent, a significant portion of my time is spent thinking about and dealing with his issues. And so it seems strange to omit an entire portion of our lives from my conversations with friends. I want to share his successes! I want to vent about the whole afternoon spent on the phone with the insurance company. But I don’t. People don’t know about this part of our lives, so I don’t talk about it.
And at the same time, I want to be an advocate for children and adults with autism, and you can’t do that if you keep your mouth shut. People with autism shouldn’t have to worry what someone will think of them when autism is mentioned. So if people like me treat autism as though it is something to be hidden and ashamed of, then the world won’t change for the better.
It’s just difficult to know how to handle it. If anyone out there has any insight or has dealt with this question, I’d love to hear from you.
photo by Patrick Hoesly
Hello, I can identify with your feelings. My son is going through the diagnosis procedure for aspergers, and on first meeting it probably isn’t obvious to others there is anything that separates him from his peers. However there is, and it reveals itself in conversations with other parents; when they are surprised of his limited diet, that he’s petrified of Santa, that he won’t fasten his coat… Alone they are insignificant but I wonder when they will put the puzzle together. I know i’ve got the last piece to that puzzle, but like you i’m yet to know if it’s the right time to hand it over. I’m not ashamed of my son, i’m so proud of him but I fear for him getting pushed out. Thank you for your post, I hope you find the right way to approach this for you both.
Thanks for your thoughts, Charlotte. I totally know what you mean. We’ll figure it out eventually.
I offer it to explain issues as they come up, but Lily displays her ASD traits a lot more “distinguishably”, so it’s a different scenario.
Thanks for commenting. It helps to know how other parents handle it.
Both of my sons are going through autism-spectrum diagnoses right now – my oldest (3 years) was diagnosed with PDD-NOS and my other little guy (20 months) we highly suspect of being autistic (testing is still underway) because he doesn’t know any words, doesn’t babble in consonants and displays other characteristics like toe walking, no eye contact, and others. As we’ve struggled to understand what this means to our family, we’ve had the same question as you – should we allow others to label our children or just keep them wondering? You’ve really summed up the struggle between allowing a support system of other friends and community members to know what you are going through vs. having a permanent label attached to your child. I couldn’t have put it more beautifully. Personally, we’ve decided that immediate family members and anyone involved in our children’s treatment (speech therapists, psychologists, etc) will be informed of the diagnosis, but other that those people we will be keeping our children’s diagnosis private for now. As someone who was VERY uninformed about autism prior to these diagnoses, I don’t want others to label my children based on what their perceptions of autism are rather than who my son actually is. I worry that school teachers, Sunday-school teachers and others will “write off” my boys before they really understand what they can do well and what they struggle with – there are so many preconceived notions about how autism-spectrum kids are “supposed” to behave (again, as I mentioned, I was guilty of this before our diagnosis). I also don’t want my kids held to a lesser standard than others because of their diagnosis – if the children are all sitting quietly in preschool during circle time, I want my son to be expected to sit quietly as well, not have the caregivers say “Oh, don’t worry about him, he’s PDD” or “He’s autistic.” He may have a harder time doing certain things in the classroom, but he should still be expected to try and do them. I know that doesn’t do much for advancing autism awareness, but my kids aren’t a cause or an educational poster – they are children and they have a right to privacy like everyone else. I don’t know if these fears are unwarranted, or if I’m being hypersensitive in trying to protect my children, but that’s the decision I’ve come to. And the beautiful thing about this choice is that you can always change your mind – you can always tell someone if you feel they need to know, or they could get to know your child and then be told about the diagnosis – it’s not black and white. Just do what you feel is best for your child and your situation. :)
Thank you so much for your reply! It helps to know what other parents are thinking and doing about this issue. I agree with just about everything you said. And it’s true – I also don’t want his diagnosis to be the basis of what others expect of him or think of him. I appreciate your thoughts about the issue. Sounds like your boys have awesome parents. :)