(You Want to Test My Kid for What? Devotional #4)
Proverbs 22:1 A good name is more desirable than great riches.
My husband and I were caught in a catch 22. We were pretty sure that our son was not, “normal.” But our state won’t let anyone in their employ help our son without giving him a label, first. It makes sense that the state can’t okay the disbursement of funds unless there is documented need for those funds. But we were afraid that getting that label would fundamentally change how the world treated our son.
I suppose we could have had him tested and labeled by the school district without telling anyone we knew about it. But the label would follow him throughout his school career. Eventually word would get out. We could have chosen to have him tested by a private agency, but again, if he needed help once he became school-age, the label would have to be shared with the school district. We knew that realistically, there would be no way to keep such a label from affecting him.
We were afraid that people would consider him to be stupid, that they would not give him a chance at life, that they would make fun of him or find ways to manipulate and use him. So we decided that at two years of age, a label was not what we wanted for him.
Was it selfish on our part to not move forward with testing? Were we just too scared to deal with the implications of a label? Possibly. Do I sit and wonder what our child would be like if we had decided to get help for him earlier? No. We made the best decisions we knew how to at the time, and I believe God will honor that.
What things do you worry about should your child receive the label of, “Autism?”
Thankfully people today are much more open to treating those with differences as an important part of society, compared to previous generations where people with differences were often hid away.
9 thoughts on “We do NOT want him labeled!”
What are these little thingy designs in the upper righthand corner of a comment?
They are pretty. They would make a great quilt design!
I have no idea, but I have often thought they looked like quilt squares, too!
We all have labels: Mom, Wife, Daughter, Shopper, Gardener, Quilter the list is endless. These are things that describe us, it is who we are. They also have a bearing on how we act and think. ASD, AS, ADD are also descriptions of a person. A part of who we are and how we think. ASD, AS and ADD have some limits to be sure, but so does being a Mom or wife. MOM has lots of limits and changes the way I think. Being a Mom of an AS and ADD child changes the way I do things and my thinking process.
Labels are not all bad. Without a label, my daughter would not get the help in school that she needs.
When I was a kid, my labels were skinny and average. I never really liked the label of Average. People expect too much from you.
Personally I grew up undiagnosed and thus also without any help.
I experienced massive amounts of intolerance concerning my quirks, my stimming, my inability to do certain things. You name it, everyone ragged on me because I “just needed to get myself together”, and as you’ll probably be aware: no amount of “getting onself together” can negate the fact of a different neurology.
I got that label at age 25. All of a sudden I could tell people that “hey, it’s not that I don’t want to get better at these things, it’s not that I don’t care, but I’m using all my resources on managing A, B and C, and there’s simply nothing left for D, E and F, and that’s because of my autism.” And people accept this. They may still feel that it’s a bother that I can’t do certain things, but at least they’re not accusing me of being lazy and mean for it anymore.
So in that regard the big, scary label has actually helped me a lot.
Additionally, it also made available disability services I need and couldn’t have gotten otherwise. Services from educated professionals specialised in my specific disability, that my parents, however much they love and want to help me, simply cannot give me.
So I can only say that the label does more good than harm.
Sure, I’ve had people tell me that I shouldn’t be doing this or that because I’m autistic, but I’ve found that the drawbacks of a label are far outweighed by the benefits.
Believe me, your child will know that they’re not like everyone else. They will know that they’re different. And if you don’t validate their difference by letting them know that “Sure, you were born different, but so what? You have different qualities, but they’re still qualities!” they will be at risk of believing what their mates will (likely) be telling them, namely that they are bad persons for not wanting to conform to the standard. Unfortunately our surroundings are very prone to disbelieving the words of a ‘weirdo’ unless a psychiatrist (or other pro) has validated their differences with a diagnosis.
Anyway, sorry for rambling.
tl;dr: I recommend getting the label. It’ll do more good than harm.
Your comments brought tears to my eyes – what an awesome story. We did go ahead and get the label – and I am so encouraged to hear that you, as an adult have found the positives to so outweigh the negatives!
To answer your question about what one worries about with a label of autism, my personal answer would probably be “nothing.” I am of the belief that even without the label, the differences will be startlingly obvious. I guess I think the label only brings further understanding, safety, and support (from adults). Kids don’t have a clue; they just think my child is odd. I guess I’ve just never understood the concern about attaching a label, but I know a lot of parents have that concern, and I recognize it as a valid one even though I don’t really get it…
Your comment is a perfect lead-in to what next week’s devotional is about (if I am remembering correctly)! That is exactly what we have found to be true. I was with you, not really understanding the concerns of a label. My husband, on the other hand was quite worried about the label, so I was able to get some understanding from listening to his concerns.
Heather, we love you so much! You did the best that you could with the best intentions and obviously still do. You are a rock star mom!
I just wanted to say…. I think there’s more understanding/resources in the public for your son, should he need them (not saying he does) and I do think, in general, people are just more accepting of that word, nonjudgmental, and realize there is a huge spectrum of “that word”. And as I do have friends in your position,….most people would have so much empathy for you. I suppose my saying “most people” I’m really saying “me”. If there is anything I can do for you, please just ask. -Nat
Thanks, Natalie, that is so sweet of you. I sure appreciate it!