To diagnose or not

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Hi,

I'm a grandma and I have a 3-year old grandson who displays atypical behaviors. He is extremely bright (learned his ABCs at 18 months by himself.) He is very loving and empathetic (when a child at daycare said he didn't want to play with him, my grandson replied "that makes my heart hurt." He has a huge vocabulary. My grandson has big blue eyes with obscenely long lashes and is adorable. Despite all these "good points" he is very quirky. He needs his covers put on "just right." He is sensitive to textures (won't finger paint, eats only certain foods.) He is not social with his peers and prefers to be a loner. He occasionally has repetitive movements, usually when he is stressed (such as daycare.) I think he's a great kid, very few behavior issues, and I love him just the way he is. My daughter feels the same. Daycare, however, is suggesting he be tested for autism or one of the spectrum disorders.

My main question is: Is it beneficial for him to be "labeled" at an early age? Will this "label" be a detriment when he becomes an adult? What benefits can a "label" have when he is functioning just fine and we love who he is?

Thanks in advance for any advice.

A concerned grandma

I think it would be best for you to get him diagnosed now so that he can have the early intervention many of us wish we had. If he does have it, you don't have to tell him just yet. I would let him live in ignorance of it for a while, since he's so young. It can be something you only bring up with his teachers or other important adults when necessary. Quirkiness caused by Asperger's and similar disorders usually isn't such a big deal when the child with it is young. The real difficulties start to appear as he or she gets older, and the rules for what is socially acceptable become more strict. I was a happy little Pre-K loner, myself. The older I got, the more distant I grew from my peers. Middle school hit me like a brick. I didn't get diagnosed until I was fourteen, and by then, a lot of damage had already been done.

I agree with Squirrelrat. You can get the diagnosis and not tell him about it yet. Then you can tell him why he's different, when demands start to exceed his capabilities (if that happens and if he actually has a spectrum disorder). I think that getting the diagnosis would be simpler now, before he developed more coping mechanisms that make things less clear.

I agree to with Squirrelrat. I was diagnosed late in life and I think it would have helped a lot if I had been aware I had AS at school and if the teachers had been aware too, so I could have got help.

The primary care givers could benefit greatly from knowing, even if no others are so informed. What you can do for him in the next few years can have a huge positive effect on him. Whether his teachers and such need to know depends on how well he does in that environment.

In my view, it is pretty tough to know what's really going on for every three year old. Theoretically, a correct diagnosis can be helpful, however, it is also very easy to be mislabeled and misdiagnosed at age three. There's a Temple Grandin movie about autism which hints at how a lack of diagnosis can cause difficulties until, sooner or later, a correct diagnosis is finally secured and the whole picture gradually clears up a little. The worst scenarios are often when young children are forced by the system to take unneeded medications often accompanied by a fib that a medication is part of the best protocol to treat the child. Often the right protocol is to be med-free at least until the child is much, much older. Good luck.

It's great that he's doing well at three, but giving him the tools to learn social cues and norms at an early age will go a very long way towards making sure he's functioning as well as he can when he's an adult.

A diagnosis is no one's business but the immediate family's and the medical practitioners. If he's at the point at 3 where he's diagnosable, it's unlikely that he'll be able to navigate the school system without an IEP, so disclosure there will be very helpful.

We all get labels put on us. SO many of us wish we'd been labeled with ASD as youngsters, because being labeled "weird," "strange," "crazy," "robot," etc, is much, much worse.

Think of it like epilepsy- not having a diagnosis doesn't change who your grandson is, or how you treat him or love him, but it means he's not getting help he needs. He'll still have seizures, but it won't have a name. It's the same with ASD. You love him just as you always have, but with a proper diagnosis, he'll get the services he needs. Nothing about who he is or how you love him needs to change.

The question is, will you need services or need to prove that you're autistic? If not, then a diagnosis is a very bad idea. But if yes to either, then a diagnosis is a good idea and it's good to get it before you're eighteen.

Yep, I just said "before you're eighteen," not "as soon as possible." You suspect. Keep reading, keep learning. You can do that without a diagnosis, and that's all early identification does-- it alerts caregivers.

And don't get too attached to the idea; he's too young to be certain.

If you do things right, or close enough to right, then you can ask him when he's a bit older. Depending on maturity, somewhere between nine and twelve, maybe. (Intellectually, I was a little ahead at that age, though, so if he's a little slower, you can wait and bring it up when he's a little older, but UNDER EIGHTEEN.) Tell him you've suspected for a long time that he may have autism, and that's not a bad thing, and it isn't a disease, and it won't get better or worse*, but some things might be a little harder for him, and there are people who think it would be nice to give people with his problems some money and tutoring. But they don't have enough money to give it to everyone who just says they're autistic, so they need a doctor to agree and give you a diagnosis. But if you get a diagnosis, they aren't the only ones who'll see, and there are people who'll treat you badly because you're autistic. If you get a diagnosis, you can never join the military, for instance. Tell him he can always get diagnosed, but one group of people who would give him money and maybe a place to live if he were in need will only do it if he gets diagnosed before eighteen. Also, if he needs it, if he gets a diagnosis, he might be able to get some things that make school a little easier. But all of the things that would be done sometimes aren't done anyway. And then you ask him what he wants to do. Ask him if he wants a diagnosis.

Whatever happens, you MUST tell him when he's diagnosed.

Another thing that might make you want to talk to him about it earlier is that when he's seven or eight, if he's really autistic, he'll find his friends melting away and turning against him. If he notices this and it upsets him, tell him then what you think.

Sounds like a smart kid, though. Not only is that just plain good, it's good because if he's really autistic, you'll have to learn a new set of nonverbal behaviors, and sometimes it will be hard to communicate. If he's good with words, it'll make bridging the gap MUCH easier. Oh, and don't listen to anything Autism Speaks says.

*Actually, the proper thing to say here is to give a fifty-page treatise on the topic, but that's NOT what you do when you first explain it to a kid. If he asks for more information and is really interested, THEN you give the fifty-page treatise.

Sometimes my bf (age 27) says stuff like that. (He thinks he MIGHT have AS.)

There are pros and cons to getting evaluated. I didn't because when I was that age, "AS" didn't exist as a diagnosis (late 1970's-early 1980's). It might have been helpful in some ways, because the authorities at my elementary school didn't understand anything and tried to blame my mom for my problems when, in actuality, she was the only one who even VAGUELY understood what my "problem" might be (she actually said "mild autism" at some point).

So yes, getting an evaluation/diagnosis (if any) at this age might make things easier later on because the schools will see this on his record and will have to give him whatever help he might need.

I also agree with keeping it quiet for now due to the "labeling" issue. As he gets older, he may wonder why he's "different." At that point, maybe you could explain it to him.

He sounds like a wonderful kid, btw.