question about labeling/diagnosing-- preschool

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Hi! I'm new to this forum. What a great resource!

I have a 4 year old boy who will likely be diagnosed with mild AS. He has been receiving supports through the school system for a year now. He gets OT for sensory integration issues and one on one time with a special ed teacher (and in groups) to work on social skills. I've seen a lot of improvement with these supports, but as he gets older, we are definitely seeing the differences between he and his peers in terms of social skills, literal thinking and pragmatic language difficulties.

Anyway, I will be surprised if he doesn't get the diagnosis when he gets retested this January through the school. His teachers will also be surprised. So, for now, I've been throwing all my (spare) energy into learning about Aspergers so that I can understand what's happening with him.

In the midst of all of this, we've had some doctors appointments. One for a well visit with the NP, a consult with just me with his new pediatrician (we just moved) and a pediatric neurologist to look into staring spells. The pediatrician was just very pragmatic and willing to make referrals based on my accounts and the testing info from the last school. The NP and the neurologist, however, both made a point to "caution" me against labeling him too young for fear of negative consequences/stigma that will "follow him through life".

So, here's my question: WHAT ARE THEY TALKING ABOUT? I'm being serious. I get that having special ed services can carry a stigma as they get older, and that teachers can fail to properly challenge them if they think he can't do something that he actually can do. But isn't it worse to be a child who can't control his body movements/sensory seeking behavior because he doesn't know how to self regulate? Or be a child who desperately wants to socialize, but stands in the middle of the room doing nothing because he doesn't know how to get in the mix.... or does things like chest bump another kid to get his attention in an attempt to initiate play?? I feel like the inability to PLAY carries way more of a stigma. Am I crazy?

I know that it's possible that he could NOT have AS. But, if we don't go through the diagnostic process, how the heck do we know? And if we don't get services that help him function, how does he improve? I mean, I know the answer to this stuff, but really, am I missing something? Is there something I'm not thinking about?

I should add that he presents extremely typical in one on one situations with adults. He can make eye contact, he can answer appropriately for a 4 year old. So, in some regards, I sort of see how they think that in their 10 minutes with them he seems fine. But, so far, I've only had doctors be wrong with him... a lot of "wait and see" since he was 2 years old and I started going to the doctor's office to talk about his behavior. It was his first teacher that came to me to say that something was amiss.

I'd love to get your input on this stuff.

Thanks!

Tiffanie

I'm 20 years old now, and I WISH I would have gotten a diagnosis that early. The earlier the diagnosis, the more help you can get. I've never understood the social stigma, because if someone needs help, they NEED HELP, no matter what other people in society think. I guess society is just weird to me in general. Makes no logical sense.

I've heard this from professionals as well. Tony Attwood has a whole section on the pros/cons of a diagnostic label in "A Complete Guide to Asperger's" which I'm now reading.

I think our culture is changing in its attitude towards differences of all kinds, including neurological differences and (slightly less so) mental health issues. I think older professionals remember a time when people had unreasonable fears about these things, and might treat someone better with the term "eccentric" than they would with the correct term.

We are still trying to get a definitive diagnosis for DS, but the long and short is I'd rather he be able to use an accurate term that has meaning instead of calling himself "cuckoo" or "crazy."

we had a lot of similar experiences with people telling us our ds was fine. oh, he can put his shoes on and walk up the stairs so nothing is wrong with him. i remember being just devistated after we did a huge assessment with 5 professionals from different feilds at once that all said he was perfectly fine, normal, average child. they saw the look on my face when my heart dropped and told me i should be happy that nothing was 'wrong' with him because he did well in his 20 minutes there. and what a releif it was to finally get a doctor who took the time to spend time with him and actually see what was going on. i don't think there is anything wrong with getting a diagnosis. at least it's a way to discribe to other people what is going on with him and that he's not being naughty or neglected. he's autistic. it also seems to help him gain acceptance from other adults and children can understand too if it's explained to them properly and not just a random term they don't understand. on top of that he now has more resources available to him, although in all honesty i can't say they've been of as much help as they lead you to think they will be. he is only in sk though, so what will come as a result of what we are doing now in the future is questionable but i can't forsee it doing him any harm. my older child is AS as well and she has a lot of trouble fitting in at school. she did her annual school speech a few years about the autism spectrum and how it effects her and it really seemed to help her with that. she still doesn't have many friends but she doesn't seem to get picked on anymore either. get the diagnosis and do whats right for your kid. sometimes the professionals let their own bias' interfere in their opinions. some people will judge the kids because they are different but in most cases i find people to have a lot more empathy for their situations knowing what is actually going on with them.

Helping our children be their best selves requires that we get them whatever services and accommodations they may need. If you need a label to get those, you get a label. If you don't need those things, you don't need the label. Ultimately, we'll do whatever it takes to help our children thrive.

But being a good parent also demands that we make those decisions with eyes wide open, and eyes wide open tells us there are things we cannot guarantee the label will or will not mean in the future. We don't know how health or life insurance companies might use that information, how employers might, and so on. One father on this forum posted that he lost a custody battle in court with his Aspergers cited as a factor (one of many factors, however). I don't THINK our kids should encounter issues in these areas, but I can't PROMISE they won't.

We got a tentative diagnosis from the school district which allowed us to access the services and accommodations my son needs. Few school districts do this, but ours did. Because we do not expect him to need disability support as an adult, we're comfortable leaving the decision on pursuing a medical (and more permanent) diagnosis to him, when he is older. He knows he is AS. Everyone who knows him and knows anything about AS knows he is AS. There just weren't - for us - any needs left to fill.

I'm not taking the position here one way or the other on getting a label, but in answer to your question...

My daughter is 15 and probably finally getting the AS label. In some ways, I wish we'd had it earlier. We focused on the wrong things and were not as tolerant of some things as we could've been, had we really understood what was going on.

On the other hand, we focused a lot on her strengths and while I'd like to say that would have been true even with the label, I'm not sure.
I think it's a legitimate concern that there might be a tendency to focus on the problems, and possibly to see or worry about problems that might be common but aren't yet really problems for the particular child.

For example: there is a boy in my youngest child's preschool class. I'm fairly certain he has AS - complete with a very stereotypical obsessive (unusual) interest, lack of connection with the other kids, etc. I'm not sure what the parents know or don't know. But I think they may know, because I've noticed they make a lot of effort to tell him in advance exactly what's happening that day, very exactly. Along with that they are certain that he does not do well separating from them and worry about it and make a big deal of leaving every day. And honestly, I have never seen a kid more fine with his parents leaving - and honestly with the whole experience- than this one. He is happy and engaged and enjoying preschool. There are several other children who cling to their parents, but not him. I'm not discounting what the parents know about their own child- maybe they are just managing everything so well that its a nonissue- but it *seems* a little self fulfilling. They think he doesn't like change and they think he doesn't like separating and in this particular instance I feel like they are missing the fact that he is utterly fine.

I hope that makes sense. Anyway, I *think* that is one reason they worry about labels. And that once the child is self aware, it could be self-fulfilling for them too in some capacity. I was and am concerned about that with mine. I don't want her to define herself solely by some label or limit herself unnecessarily. Also, of course, as others mentioned, there could be some perceived stigma.

Again, I'm not arguing the point. We're seeking the diagnosis because at this point I think my daughter is better off knowing that she doesn't have a character flaw and that there's a reason she's struggling so much, and that there are a whole lot of other brilliant people out there who are much like her. It helps us understand her and it helps her understand herself. And also it may help us get some services (a really important reason).

I don't feel particularly eloquent this evening. I really hope this makes sense.

You are already treating the symptoms, regardless of the diagnosis. IMO a diagnosis is important for two reasons - insurance coverage and knowing how to treat. In your situation, I do not believe a formal diagnosis is important. You are getting proper treatment, learning how to parent, and getting help from the school. In your particular case, the diagnosis doesn't matter.

There are other cases where no one can figure out what is wrong with the child and therefore, the child is not receiving proper treatment. Or the child could be misdiagnosed and receiving the wrong treatment. Other cases, maybe the insurance company will not cover certain necessary services without a formal diagnosis.

I don't know if I agree with your doctors regarding the reason for not having a proper diagnosis. Following your child through life - it is your choice if you tell a new school he attends, his choice if he tells his college, his choice if he tells his friends, really, your choice if you even tell him. It is a choice if it follows him through life. By the time he is old enough to understand his diagnosis you may decide he is so recovered, that there is no reason to tell him until much later. The only area I see a potential problem with it following him is if you at some point have to change health insurance companies. Many states have laws that Austism related disorders must be covered, but they always find loopholes not to cover the services you need, or may jack your rates up.

This is sort of why I was baffled by the doom and gloom outcomes being predicted by the Doctors, and why I was wondering what I was missing here. I couldn't understand what would be following him through life in terms of "outing" his diagnosis (if there is one). As far as my own attitudes toward my child, I have been going through this with him for the last 2 years. Prior to his evaluation at his preschool last year, I had been already reading books "Raising your Spirited Child", etc to try to figure out how to deal with his behaviors. Until he had his evaluation at school and getting support from the Special Education Department, I was getting nowhere. I was frustrated and feeling very isolated from my other mom friends. And my son was not doing well. He was crying every time we went to a playground or group playdate because he was so overwhelmed by all the transition/commotion. So, in a lot of ways, I've already started the process of labeling behaviors in order to make sense of it. The challenge for me, now, will be to make sure I don't get bogged down with "deficits" and can focus on his many strengths.. and he does have a lot of them. He's a pretty awesome kid.

I wish I knew how to quote several things in one post, but I don't!

I will say that I really appreciate the responses and the candor in them. I think the common thing I'm getting from all of it is that we have to be sure to recognize the whole child. I have been working very hard on that. As most of us probably know, it's hard not to focus on the "deficits" when we are thinking about how to help our children. The truth is, I have a very charming, happy little boy on my hands who just needs some extra support at this point. I will have to find out from his school what he will get in terms of services with or without a diagnosis as we go forward. The truth is, they are doing a good job at school right now. But, I don't know how much it has to do with the particular teacher and the way she runs her class. He is like night and day from last year. In fact, since it's a new school district, I thought they were going to think I was making the stuff up from last year!! Really, though, the teachers still see where he needs support (still needs a lot of facilitation in social interaction and imaginative play), and that's a good thing. I guess we just have to stay open to the fact that needs will evolve/change over time.

The person who gave the account about the kid in their child's preschool. I think I can sort of relate with those parents! Last year, my son was struggling so much with transitions that he would either pummel all of the kids around him or he would run around the room, opening and closing doors, turning lights on and off, steamrolling over his friends at circle time and literally bolting out of the door over and over again. When I give these accounts to his current teacher, she can't even believe it. He is very well behaved at school this year. Part of it probably has to do with him being a little more mature, part because he has had so much support now dealing with transitions and self regulation and also, this teacher he has this year runs a very regimented and organized classroom. When the school year started, I was very anxious and asked the teacher to provide their schedule... and I went over it with him beforehand, etc. Once I realized that he was doing well, I adapted though.

I suppose all parents have to work hard at balancing going overboard vs. not doing enough when it comes to making sure their kids are successful.

Thanks again everyone. I'm looking forward to reading more posts on here.

Tiffanie

I waited, fearing the same thing. It sounds paranoid in hindsight, but I didn't want the school system taking any diagnosis and "running away" with it or setting her in a particular path. Now in hindsight I can see that she would have benefited by a diagnosis about two years ago, which is when she started having social anxiety as a result of having ASD and having to interact according to what is "expected" The thing is, it didn't even occur to me that it could have been ASD back then, I just saw her as a very introverted quirky kid-- which in my book equals AWESOME!

i get so frustrated with this kind of thinking, especially from the professionals who should know better. a diagnosis is not just a label. would we hesitate to diagnose a child with diabetes because of any potential future stigma? would we hide a child's cancer out of shame? no, we do our damnedest to get them an accurate diagnosis so that we may TREAT IT. it should be the same for autism and other neurological disorders. identify it so you can treat it with the appropriate therapies.

i have had a lot of disappointment also from professionals. when the school failed to do an eval for 5 months after we requested it, our next step was to take our son to the ped and tell him we suspected autism. his response to us was, "what do you want from me?" uuhhhh, maybe, HELP. a direction to go, information, tell us what we need to do, what our son needs to succeed. even after getting an initial (mis)diagnosis of asperger's, the school professionals refused to give him autism spectrum disorder eligibility, so he couldnt get autism specific SpEd supports.

i am rather envious of people who are able to get supports and services =) where we live, its a giant black hole for autism resources. i am a research freak with things like this, but i have literally had no choice but to educate myself to the point where some of K's therapists dont even know what i am talking about. heck, when i called to get him a referral to a neuropsych i finally found 100 miles away, the referral specialist at his ped's office made me repeat "asperger's" twice, as she didnt know what it was!

maybe professionals need to worry less about failing to diagnose due to the fear of stigma, and more about failing to diagnose from their uneducated colleagues.

wooo, oops, heh, you found one of my sore points =P

I am an extremely outgoing person who has always loved introverted, quirky people. So, I know what you mean.

This is a very good way to think about this stuff. Thank you!

All of the people I've met through the special education department where I live now and where I lived last year have always complained that for some reason the doctors just aren't making the referrals they should. Our pediatrician really should have told me about the Early Intervention program for my son. I didn't even know it existed until it was too late. Of course, we got lucky and he got good services through the school system at age 3.