Quick recap: We are not certain whether to pursue official diagnoses for the children, two of whom were categorized autistic in the public schools for services.
After another conversation with my husband that went nowhere, I had the idea that the 12-year-old was certainly old enough to have an opinion. In fact, it seemed only fair to bring him into the conversation since it is a decision that directly affects him. I was astonished to discover how oblivious he has been. The approximate conversation follows.
Me: Your dad and I have been trying to decide if we should have you all evaluated by a neuropsychologist.
John: Why?
Me: To see how your brains work. A neuropsychologist studies how brains work and I think we might be able to develop better curriculum materials if we knew for certain what's going on.
John: What do you mean "what's going on?"
Me: John, did you notice when you were at public school that you had help with things that most of the other kids didn't have help with?
John: Not really.
(At this point I realized that the conversation would be far more difficult than I'd expected. I had assumed after our several discussions about being different that the horse was already at the water and ready to drink.)
Me: Hmm. They told me that you had an assistant who made sure you kept your assignments written down in your agenda.
John: Oh, yeah. And she made sure that I didn't stare off into space and did my work.
Me: Did most of the other kids have an assistant?
John: No, they were pretty much self-motivated.
Me: Why do you suppose they were self-motivated and you weren't?
John: I don't know. Maybe I just care more about video games.
Me: Perhaps. We know that it isn't because you are not intelligent.
John: Yeah. I'm smarter than most of those kids.
Me: John, have you ever heard of autism?
John: No.
Me: So you did not know that the small class where you started that school year was the autism classroom?
John: No. What is autism?
Me: It describes brains that work a little differently than the average brain.
(John is silent.)
Me: Did you know that the school categorized you as autistic when you went back in 5th grade?
John: (eyes wide, incredulous) No.
Me: Then they changed it to "cross-categorical" and took you out of the autism room because you did not need so much help. "Cross-categorical" basically means that you needed help but they weren't sure exactly why.
(John is silent.)
Me: We've been wondering if a neuropsychologist might help us understand why.
John: Well .... then I guess we should do it.
He wanted to know why we would think they were autistic and I described some of the sensory issues and behavioral issues that he and his siblings exhibit that suggest autism. Then he said, "Sounds like autism, then." He was very matter of fact about it. After sitting with his arms folded for several minutes processing everything he suddenly did an about face and said, "On second thought, I don't want to do it."
Me: Why not?
John: Because I don't want the label. People will think I can't do things.
Me: What if we just had a consultation and didn't get an official diagnosis?
John: I don't know. (pause) Maybe I should. (pause) Maybe I shouldn't. I just don't know and I don't want to think about it right now.
John was getting distressed and we left that conversation.
And so.
I almost don't know why I am posting this. I think I need the perspectives of other parents, and the perspectives of others nearer my son's age. On the whole I am alarmed at how oblivious he has been to all that has gone on in his educational life. It isn't as if we've tiptoed around issues or hidden anything from the kids.
Was I right to bring him into the conversation? Was there something more I should have said? Now that this door has been opened, do we close it again or return to topic in a couple of days after he's had some time to process things? I hesitate to talk too much about manifestations of autism before a consultation because he may adopt or repress things according to whatever he has chosen as his desired outcome. I am feeling very, very alone on this. My husband says I am obsessing, and I told him that of course I am -- if we didn't have kids I'd be obsessing over something else. He knew that when he married me. Enough already. This is more than long enough.
Hai Grizeldatee,
What would be the benefit for your children to get a diagnosis? School already is doing all they can, and it seems to work out fine. I'm asking you, because I'm sort of struggling with the same question.
My nine year old is doing fine. School treats children as individuals, so she has her own program and gets help where needed. (especially organizing) But in a few years she'll have to go to another school, a 'learning factory'. She probably wont cope in that environment. And those schools only help children if there is an official indication. Than they can get money to pay for this extra help. Lots of primary schools work the same way, we are lucky to have a school that likes to work individual with children without giving or asking labels.
I told my daughter I wanted a diagnosis for myself and why (I'm recovering from a severe breakdown, and I think ASD has to do with that). She then said she wants a diagnosis for herself, because she knows she is different. She wants to understand more of herself. And she hopes to come into contact with children like herself.
But I'm having problems with the label. I'm happy I did not have it when I was 10. Now I think I'm stubborn enough to find my own way of living, even if 'experts' would think it might not be wise. I'm having second thoughts of getting her tested, because I don't want my girl to be pinned down by a label.
But maybe it is wise for me to go on with getting this diagnosis for her too. She still is in this school. They will not start treating her according to 'expert protocols'. They will still look at HER and what she needs. So she might become stubborn enough to know what is good for her too.
You have brought the subject up with your son. Now he knows there is something different in him. He might see it for himself the coming years/months/weeks. He might want to know more about autism himself. And he might not.
I don't know how a next school will help him with organizing his tasks. You might look into that and decide with the prospect of a next school in your mind. If you think he might not do OK in that school, because there wont be extra help without a diagnosis it might be wise to get the diagnosis now. Otherwise, why not wait till your son is ready for it, or really needs it.
Your 12 year old had no idea he was different. My 9 year old has. Maybe your other two children have a different view on themselves as your oldest.
Getting a diagnoses when your child does not want to seems like breaking in in his privacy, unless he really can't do without this diagnosis.
I'm strugglig with the same question, from a different point of view.
And the waitinglists here are very long. That is a reason for me to go through with it. If we wait till we get problems it might take more than six months before they start the testing. And a lot of harm can be done in those six months.
That's just it, he did and does know that he is "different." We've talked about this many times, over many years -- from the day I took him out of public school just before he turned seven. He returned only for 5th grade... because he wanted to. This is why I was so surprised that he responded as he did.
He is not in public school any longer. He was homeschooled last year and I plan to do that again this year. The public school did their best, but it was not the best place for John. He wanted to come home.
I am not even certain that it is a diagnosis I am after so much as a professional opinion. There are some aspects that are consistently described as characteristics of spectrum that simply do not fit, namely inability to abstract and generalize. I'd like to be selecting educational materials based on what is going to be most effective and engaging, but maybe materials targeting the "typical" student on the spectrum won't be a good fit for him. In addition, they each have unique abilities and learning modes, so planning three individualized curricula is complex and frustrating. Trial and error gets pretty expensive pretty fast. They don't worry about this at the schools. They don't agonize over whether real learning is occurring -- they just push a spectrum kid on through the material that everyone is doing even if it means an assistant sits beside him/her to redirect attention (about every 5 minutes) back to materials that are basically meaningless to him/her. I am also considering whether a strong focus on neurodevelopmental activities for several months before returning to a regular curricular schedule could be a more productive course. In short, I'd like to have an opinion on this other than my own! I'd like it to be some one who has worked with a lot of spectrum kids and doesn't believe it is the student who must adapt curriculum rather than adapting the curriculum to the student. Or hearing from students or parents who have knowledge or experience would be nice. And, ultimately, no, I don't know whether there would be any benefit at all.
Oh, and I certainly would not take him against his will. Not sure how that idea was conveyed, but I never intended to imply it. He is processing. I am processing. We'll see.
As for you all, if the waiting list is that long is there harm in putting her name on the list and then removing it later if you have a negative personal diagnostic experience? Is there any way to be diagnosed without having an "official" diagnosis?
It's been a while, but if I were 12 and had a similar conversation, I think I'd be in the library or surfing the net reading everything I could find about autism.....and feeling sort of strange about the whole thing.
Plus, what you do will probably affect the younger two kids--will they get to have the same choices as the oldest?
It sounds like you need support and advice, Griselda. I hope you have some available options for getting this for yourself.
Just because I want to know what will happen in diagnosis, I'm going first. I also asked what would happen after diagnosis of a kid. If they would brief it to all kinds of helping instances. Well they would not, so that is a relief. The philosophy of the testing centre seems to be, "only offer help, when needed. And when wanted, because it won't do any good if its not wanted."
I can see that you want a professional, experienced person to talk about learning methods. And that it will be very valuable for you. John might understand that too. He has his own vision of the world, no-one has it like he has. So learning methods, that fit him will be the best. And he will know that too.
I don't know if you really need a diagnosis or rather someone who will observe him studying and learning. Some-one with knowlegde who might see things you just didn't. Combined with your knowledge and your observations you could probably come up with very good solutions.
And John and thinking abstract. Does he really do that, or is it his capacity of seeing that far and much in detail. I don't know how to explain. But I was the best in math first year of university. Not because I thought abstract, but because I still could visualize. Others thought it abstract. To me it was not.
And does John think abstract in all regions you can think abstract in, or in just some?
Things like this would be nice to discuss with someone with a lot of experience. And maybe John can see the benefits from that.
With my daughter I'll go with her wish I think, but I will talk with her about labeling too.
hyke, John 'gets' jokes, and always has. He enjoys word play and double meanings. He is able to apply basic principles learned in one science experiment to create original solutions when approaching a different experiment. This might be why he was recategorized in 5th grade to cross category. By the end of that year his resource teacher simply said, "John is John." However, when they observed and tested him coming into the school, they thought the autism classroom was the correct placement. Any casual observer who knows anything about autism would agree -- yet it was not right.
energeia, he has not done this. He loves reading wikipedia, fan fiction, playing video games, watching the discovery and history channels. He has not looked for any resources regarding autism since we talked yesterday, not even at wikipedia. After seeing the mess at this board today, I am pretty glad he did not wander in here looking for information.
The younger two have seen, and adored, so many therapists that another one would be eagerly anticipated by either one. They love the therapists and that is pretty much as far as they relate at this point, ages 7 and 8. I would say that they are also aware that they are different, but after yesterday it may be more accurate to say that the 'should' be aware that they are different. John and I had this conversation in their presence, by the way. We do not keep secrets in our house. They were both quiet and attentive, but neither had any questions afterward.
I'm looking for local resources, but part of that is knowing precisely what we want and don't want. It isn't just looking for evaluators or neurotherapists or counselors or whatever, it is also learning from other parents about their experiences. I talked to a mom today who said to check out cogmed, that they'd had some positive reviews from Harvard and the like (which may not mean anything). I haven't googled them yet.
Jokes like wordplay are so much fun. You explore language to the limits. A metaphor, you can learn them active. I read lists of sayings as a child, I read in the dictionary, I listened to what people said and how they used language. I see paterns in how people use there language. Then the pattern changes. THe fun is in what happens to the pattern. And its play to see how it can be laid differently.
Aspergers are often described as not getting jokes, but also as getting wordplay jokes and language jokes very fast. It's just the game of the puzzle.
And in applying a skill into another experiment might mean that he is great in pattern recognitin and in seeing that two in "two elefants" is the same, and totally different from two in "two mice". Its like another wordplay. Another puzzle.
That should be "recognition" of course
Cogmed looks interesting (cogmed.com, of course). It is quite pricy, though, and they claim only 1400 people in the world have used it. I wonder how many were handpicked because their specific issues were most likely to positively respond to this type of mental exercise. I'd really like to talk to some one who has experience with it who is not at their website.
There's a part of me that feels somehow dishonest by sidestepping diagnoses. Knowing for certain would require more of us somehow. A greater commitment. Something. I can liken it to being a black woman in 1950s America who can "pass" as white and, therefore, chooses not to active take a stand against the injustices of the time. A totally practical and self-preserving decision, but somehow just a bit cowardly and dishonest, too.
My husband took all the tests here today and he is just a very nerdly fellow, apparently. I was really surprise that his SQ was only 40. Guess you never can tell. After reading through the questionnaires, though, he is certain that I am ND. Whatev.
Grizeldatee, your children have been treated as autistic in school. You're not pretending not to be. You just don't want the stamp. That's not dishonest. The stamp can be used dishonest against you. And its wise to have serious doubts.
Thanks, hyke. I'm feeling better today. Put out another feeler at a local support group looking for advice and recommendations. I want to give them wings, not cement shoes.
In my case I insisted that my son was officially evaluated at the school when he was in 1st grade. I feel these are the advantages:
--The teachers and aids are all aware that he has special abilities and special challenges. They try to accommodate him. For example, the librarians let him "hang out" in the library instead of going to recess. He feels safer there.
--The principal keeps a special eye on him to be sure he isn't bullied. I remind the principal that he has to do this.
--when my son does something "wrong" at school they are more likely to "cut him a little slack" and not jump to suspension so fast. Example, once in the computer lab he did something so the "mice" and "computers" were doing all kinds of "special effects." Instead of suspending him, they gave him the chance to go back and fix all the computers. Which he did.
--when I ask for something on his behalf, they can't say no. For example, I asked that they set up a special bus to take him to the community college for his math (he was 11 when we started this) and pay for all expenses. They couldn't say no.
So far, for us, this has worked pretty well. I haven't seen any disadvantages at this point.
nadine, the
school insisted that my kids be officially evaluated.
However, they were very clear that what they did was appropriately called a categorization rather than a diagnosis. Last Thursday I consulted with a well-respected neuropsychologist and he actually agreed that unless the schools or government was contesting service provision for my children there was little point in obtaining independent diagnoses. He asked questions about my children's self help and social lives and whether I had any specific concerns. It became clear that I do not have any specific concerns, what I have is parental angst. I suppose that is unavoidable. For the moment, though, I am feeling confident that I am making good choices and doing the right things for the kids -- first, I've had a rather validating talk with a professional and, second, I have started a book of essays by Alfie Kohn that reaffirm our decision to homeschool.
Oh, I think I mis-understood. I think if you're home schooling, then it does seem rather pointless to have the school evaluate him. I'm glad homeschooling is a good fit for you and your son.
I understand about parental angst!
The school has already evaluated all three of them. This is the first year that they have all stayed home. I think we're gonna be OK.