should a teenager attend the IEP with parents?

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We have a kind of transitional IEP meeting, from 8th grade to high school. The administrator for this IEP has said that my son is invited to come. My first inclincation is to NOT have him come, because then we can't discuss problems he may be having in school in front of him. Also, we have never discussed his diagnosis with him, and I don't know if they will be able to run the meeting without a mention of his diagnosis or without saying "kids on the spectrum", etc. On the other hand, it may be beneficial to have him come, so that he may be able to discuss problems at school from HIS point of view. The biggest problem we have right now is the amount of homework, and what a challenge that is, but again, we have made the decision to have him do all the homework and not have some of it eliminated. We figure, hey, in the real world, a boss won't eliminate some of his work for him, so why do it in school. But, it is an enormous challenge, for him and for us.

Anyways, I digress . . .

My real question is -- how have you parents handled this kind of transitional IEP where your child is invited to sit in? If he/she has come with you, is your child aware of their diagnosis?

my kid wasn't in the room the whole time, but I did take him and met first with the staff then my son came in. my question is why are you hiding his dx from him? he probably already knows he's different. I've never tried to hide my kids' dx or my own from them, not that they care much... but then I'm also the parent who raised them with the understanding that santa clause is pretend.

I'm not judging, I'm just curious if there's a reason you're hiding his dx from him.

Funny, I was JUST speaking to someone about her daughter and this very subject. She is taking her daughter because she knows better about her struggles than anyone else, and is willing to go. She is aware of her diagnosis however so that isn't an issue. She is also transitioning to high school and her mother feels this is the right time for her to start going.

I struggle constantly about telling my child about his diagnosis, and I know people that have children who have no idea that they have any disability at all and do well in school. Personally I understand both sides........that said.

Do you plan on sending your child to college? If so, your child, during college and beyond will need to learn to advocate for themselves. If you live in the USA, even when people go to work, there are certain rights they have under the Americans with Disability act that your child will eventually need to understand. People will accomodate him, and are supposed to by law, even after school is over and they are working. It isn't something that needs to be disclosed at an interview, however if he is having trouble at work for whatever reason, and needs an accomodation to work more effectively because of his disability, they have a right to it. My question in your situation would be...when do I disclose my sons autism and when do I start transitioning the advocacy from the parent to the child, or, do you want to do that in the first place?

Only you can answer your question because only you know your child. It will be to your childs advantage to tell him at some point. There is no need for him to struggle as much when he doesn't have to.

I don't know that I answered your real question, but I thought I'd throw that in to give you something to think about.

Good Luck! I know these meetings are hard and this is a really tough decision for you. I'm sure you will do the right thing....go with your gut. It's usually right.

I am an aspie and I attended IEP meetings when I was a child and allthroughout my adolesence. It's a good experience because it helped me to understand my needs, why I was recieving the support and also it helped them that I was there because then they could ask my opinions and see what I think about their suggestions. I felt like I was in control of my life because of that. I really hated it when I had no idea why I was recieving support and getting therapy. I have pretty always known I had a form of autism, but I didn't know what it was until I was about 10ish, when I was finally given a proper explanation from my teacher and the therapist. I felt so relieved when I got the explanation and I was a lot more confident about myself.

I personally think that your child is old enough to be told about their diagnosis. I don't know your child and how they would react, but this could be a good opportunity to explain this to them.

Anyway, I hope this helps.

Whether or not you should take him depends on how he handles criticism. If he becomes defensive and argumentative when it is suggested that he has problems then it is probably a bad idea. If he is open and willing to have an adult conversation then I would say that you should take him.

But I must say that the bigger issue at hand is WHY IN THE WORLD HAVE YOU NOT TOLD HIM YET!! !! !!*

Trust me, he has noticed by now that he is different. You aren't helping his self confidence by letting him think that he is like everybody else. He knows that he has problems, and he knows that he doesnt fit in. That much isn't a secret to him. The only thing keeping the truth from him is doing is letting him think that he is a freak who has all these problems. In the absence of any other information, the only conclusion that he can draw is that he is the problem. I would have given anything to know that there was a name for people like me growing up, and I wasn't just some random 1 of a kind freak.

*! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !! !?

Why shouldn't your son attend by himself, he's not going to get anywhere
in life with you protecting him, or talking about him behind his back.
The invite was for your son.

I am really not an advocate of hiding a diagnosis from an older child. He's getting an IEP and has already been labeled as "different" by the school system. I attended my IEP meetings from the age of 8 up.

I'm going to try and not sound too angry with you; I really will try, but I can't promise anything, because parents like you do tend to lead to me experiencing anger. You've probably not told your child because you don't believe in "labeling" your child and you think that him knowing will only reinforce his autistic tendencies. You've bought in to a very odd way of constructing illness and disease which has been promoted by media and other sources. While there are certain cases where it is beneficial to withhold diagnostic information from the individual diagnosed, they are relatively rare and autism spectrum disorders do not usually qualify.

Your child probably already knows he's different. Every child with disabilities has that realization at some point, no matter how much their parents attempt to shelter them from their difference. Yes, it's culturally constructed, societally imposed difference and othering (I can and have written extensively on the subject in academic fora). That doesn't change the fact that it happens whether you want it to or not. Your child is old enough that he should know, quite frankly he should have known years ago, what his diagnosis is and should be involved in his IEP or care. You have absolutely no idea how you hamstring your child's teachers and educational specialists by refusing to allow them to discuss or mention autism in his presence. He needs to develop coping skills. He needs to have agency in his own life.

I know what it's like to go through life not knowing that you have an ASD only to find that your parents knew. I wasn't any less autistic because I didn't know what it was called. I still didn't understand nonverbal behavior, I still didn't understand many social norms and rules. It made my life difficult in middle school, high school, and college. It made my life difficult in grad school, where I had to cope with only having known what was "wrong" with me for a few months. I spent much of my life searching for answers to why I got depressed frequently, why I couldn't interpret nonverbal behavior, why I had trouble with romantic relationships, etc.

I worked with autistic college students, too. I directly supervised one. His parents didn't tell him either, and his life hasn't been any easier because of it. It's much harder to teach coping skills and strategies in the mid 20's than it is in childhood and adolescence. The students who knew about their diagnosis and were able to be proactive in getting assistance and training were far better adjusted than the ones who didn't know of their diagnosis.

Many of us luck out and teach ourselves how to figure out nonverbal communication; I was particularly lucky in that regard; I also had therapists who caught on despite my parents. Many people aren't that lucky.

Tell your child. You have no excuse not to tell your child.

does anyone know this kid? does anyone know how this kid feels? or what he sees? or how different he really is? or whether or not he thinks he's a freak? Maybe he is totally OK with the way he is and telling him at this time is the wrong time.
Maybe he has severe anxiety and his parents are waiting until he is able to handle it.
does anyone know the reason why his parent aren't telling him?
does anyone know how hard it is to tell your child something like this? or how much a parent struggles with this?

There are people on here who have told their children and it backfired. This is not black and white.

There is nothing wrong with protecting your child. There is nothing wrong with helping your child get through life when they are emotionally ready. Dropping your kid in a situation that is too much for them to handle is not the way to teach someone coping skills. Here, I'm going to throw you in 12 feet of water...swim or drown.

Gee whiz guys! Cut this woman a break!

As stated you have to quit hiding the diagnosis. I too find this EXTREMELY problematic. You need to tell him, and he needs to be there. Right now, you are withholding the truth, and withholding the truth from a teenager can be particularly problematic. Its time you start being honest with him before you find the relationship with him in shambles. In addition him being there is going to help him identify what the problems are, problems you probably do not take as seriously as he does.

I am going to state this clearly, most parents of autistic children screw up in adolescence and transition to adulthood. From here on out, he needs to be fully informed and involved. I stress NEEDS to be. Its a cold hard truth that has to be drilled into every parent with a child who has an ASD. Autistic does not equal mentally ret*d, its time to stop treating him like a child, and start treating him like a teenager, a person who is preparing for adulthood, and needs to be ready with full knowledge of his assets and deficits. By definition, he is intellectually already there, if you start being a good parent and be honest with him, and he has some voice in his own future, he might be emotionally better prepared for adult life.

I have struggled over this issue for a very long time and it's really hard for me. I have even inquired about it on this website. My question is why do I need to make a point to put a label on him? My son is the way he is, and I don't make a big deal about it. There are things that are hard for him and things that are easy. When the day comes that he asks me why other kids are blah blah....why am I not that way, then I will tell him. To me, that is an appropriate time to bring up autism. For each kid it's different. Maybe he's not ready. I agree that a teenager is pretty old, but you don't know the circumstances.

Look how strongly people feel about this. Maybe telling young is the right decision, however this is not an easy decision for someone who is responsible for shaping a persons life. Telling a child that isn't ready can be just as bad as waiting too long. Who has a clear answer on when that is?

By the way, ALL parents screw up the transition from adolescence to adulthood. Mine did a FINE job

My daughter (NT) started attending her IEP meetings when she was in middle school. At the beginning, she sat in for only part of the meeting, so that if there were things being discussed that were deemed unsuitable to be discussed in front of her, she was not there for those portions. This was particularly true when there were problems that people felt it important to discuss freely without having to be "careful" about how she might react to hearing what the adults were perceiving. Despite the fact that some portions of the IEP meetings were held without her presence, it was important that she was there for parts of them: none of us could really know why she behaved the way she did, or how difficult (or easy) various parts of school were for her. We NEEDED her direct input; otherwise we were just guessing. By the time she was in high school, she was present for the entirety of all her IEP meetings.

Similarly, my son (Asperger's), started participating in school plans (private schools don't have IEP meetings) when he was 8 or 9. If he hadn't, I would have made the mistake of curtailing homework more than necessary (yes, at that age he told us he didn't need his homework adjusted as much as I thought it needed to be!). He didn't come to the full meetings - he sat with me and the guidance counselor. He didn't know his diagnosis yet (he had just been diagnosed and it took another few months before we thought he was ready to hear the diagnosis), but he knew that he was having some issues that other kids weren't having.

When we had our first IEP meeting with the school district, we did not include him since we were battling some major issues and it was not the time or place for him to be involved. He had spoken to his advocate and the psychologist about what he felt he needed, and they were able to convey his concerns. The next IEP meeting, however, he did participate in, from start to finish. He didn't say much, but his presence was, again, important. Without him, we would have been guessing about important things instead of getting accurate information that we, as the IEP team, needed. He knows if he isn't doing work in a class; it shouldn't be a surprise, or a problem for that to be reported. If there is a problem, the student's perspective on what is going on is going to be of major importance in trying to solve it. If it can't be discussed with the student there, there is no way that it will be solved.

If there are things being said that would upset your child, maybe there is a problem with the school and its attitude towards the students - if the attitude is that all the problems stem from the student not doing what s/he "should" be doing, rather than there being a disconnect between how the material is being presented and how the student learns, it may be a bad environment for learning. It's also not useful for planning for students by looking at how "students on the spectrum" learn. Different students on the spectrum learn differently. You won't be meeting to discuss "students on the spectrum." You'll be meeting to be discussing one student - your child.

You are going to have to decide how to deal with the issue of your child not knowing his diagnosis. I know other parents who share your position. We have taken a different position, and shared the diagnosis with our son relatively soon after he was diagnosed. It's an individual decision, but as your son grows up, you will need to face the reality that he will need to be told. As others mentioned, when he goes to college, or otherwise needs accommodations as an adult, he will be responsible for procuring them on his own, and he can't do that unless he has the information he needs to do so - i.e. his diagnosis. Regardless, it is important that you include him in the IEP meetings; if you don't want mention of his diagnosis made, make that clear to the other team members. It is certainly possible to have an IEP meeting without mentioning a diagnosis - the impact of the diagnosis is what the school is dealing with, not the diagnosis itself. Your son must be aware of those issues, and it is important that he be able to discuss the things that are causing him problems, as well as what things his areas of strength. He can shed light on what helps him, and what causes him more problems. That is why his participation in the IEP meeting is so important. It is also important because it helps him start to learn self-advocacy skills. When he participates, he may become more engaged in the entire educational process! Being part of the IEP team might be the best way there is of having a student "buy-in" to the educational process!

I told my 14 yr old son about his diagnosis when he was 10, and I told him in a gentle, matter-of-fact way, and have encouraged him to learn about ASDs ever since. He has also been attending IEP meetings since he was 10, and at the last IEP meeting entering 8th grade, about 2 months ago, I let him run the meeting! He made an outline, handed it out to the team, and led the discussion. The teachers were thankful, and gave him very positive feedback. Also, he told me he is glad I told him about his diagnosis because now he knows why he is different. He also told me he is glad to attend IEP meetings because he wants to do better in school. On the other hand, he missed the most recent meeting two days ago because he forgot, and it was just me and his teachers and everybody lamented that we wished he was there so we could get his feedback.

Schleppenheimer, every situation is different and I respect your decisions. However, I can't help but feel that the sooner you tell your child about his diagnosis and involve him in the IEP process, the better it will be for him in the long run. Its a difficult decision to make, and I wish you and your family all the best.

My opinion regarding labels: It is human nature for people to "label" other people in their minds based on mostly very superficial information. This is due to prejudice, and you cannot prevent people from pre-judging or "labeling" other people any more than you can prevent them from breathing. Everybody pre-judges others all the time. Its human nature, pure and simple, and the only thing you have control over is how you react to your own prejudices and how you teach your children to react to theirs.

That being said, AS is a diagnosis.

They *made* us go to our IEP meetings every year, but I refused every time. It's so pointless and stupid. Let your son make the ultimate decision.

The label isn't likely to mean much more or less to the child than it means to the parent: an explanation, and a means to an end. The IEP exists because of the label. As much as labels don't define the child, they are a tool of this world and its difficult to have a label without learning what to do with it, in my opinion.

As for your question, I realized while reading your post that my son HAS attended an IEP meeting, last year when he was 11, but it was a bit of an accident, because he was sick, thus home with me and not in class. After checking with him and separately with the team, it seemed best that he just come along. He's got a pretty strong self-image and isn't bothered by people talking about we think of as his issues, and I warned him that was exactly what everyone was going to be doing. He could have left the room at any time, and he choose not to. He also choose to sit away, not part of the meeting table, and only participated when either someone asked him a question directly, or if we came to a topic he was passionate about. This is his life, and he wants to be informed, but he does trust me to handle this sort of thing because, in all honestly, he simply finds the administrative aspect of it boring.

But the big difference here is that he does know the label, and he does know how everything is connected, and he has since we first went looking for a diagnosis.

You are reaching a new stage with your child, and it is a good time to wonder if he should be more fully informed. High School is the transition from parents doing and deciding for a child, to that child doing and deciding for themselves. The child won't be able to do and decide properly without all the information, so you know that this talk is going to happen sometime in the next four years, the only question is how soon.

Its interesting how many passionate replies we've gotten in this thread on the topic of telling your child about the label. The threads here don't always go that way. While I would say that this board definitely pulls in the direction of most kids knowing as soon as they can understand, we've also got a solid base feeling that not telling is better. I wonder if the difference, the reason you've gotten such strong opinions, is the age. Its easy to call it gray when talking about a 7 or 9 year old, but that changes the closer the child is to independence. You do know your child best, and I will trust your judgement, but it is definitely time to have a plan on that aspect, if you don't already.

I don't know very many psychologists or licensed counselors who advocate hiding a diagnosis from a child with the capacity to understand, especially once that child has started having to deal with having a particular disorder or illness. My concern definitely has to do with the age of the child; if he's starting high school he's probably around 14-15; even teenagers with disabilities need to feel like they have agency and a modicum of control over themselves and their environment.

Labels exist because they have meaning. That meaning can be imposed internally or it can be imposed externally. They're not horrible things to be avoided. Yes, I can understand not mentioning it between the ages of 3-10, because it's possible your child was misdiagnosed, but your child is receiving services for an ASD. You obviously buy in to the diagnosis enough to allow him to receive diagnosis.

Those of us who weren't told are probably more likely to feel strongly that parents need to disclose to their children in an age-appropriate manner when the child becomes curious or has another reason to know. The fact that your child is getting services via an IEP indicates that his ASD is more than a label... it's a reality. It didn't magically disappear because nobody told him. That's a silly pseudo-scientific idea predicated upon a fundamental misunderstanding of certain schools of post-modernist thought.

By not telling your child, you're taking power away from him. You're not allowing him to participate in the decision making or information gathering process about himself, you're reinforcing the image of people with disabilities as incapable of caring or advocating for themselves.

I feel strongly about this, because I don't want another child to go through life like I did. Dealing with constant bouts of depression and the other symptoms of autism negatively impact your life. Finally, one day you're frustrated enough to walk in to a psychologist's office and you happen to have had a conversation with a friend who has AS about the fact that maybe you might have AS. Then, you're nervous about disclosing your new diagnosis to your parents only to find out that they could've saved you the trouble by telling you about the diagnoses you received as a toddler.

You might want to give this thread by Grace09 a read. It's a very good example of what happens when parents think it's a good idea to hide the diagnosis from their child. To your credit, you are at least getting help for your child so that perhaps he will not be as maladjusted as Grace09's stepson.

I want to thank everyone for their responses to my post, even those that had a tendency to come "down" on me for various things.

Having said that, a lot of assumptions have been made that are, quite frankly, incorrect about my son and the fact that we haven't disclosed his diagnosis to him yet. I was prepared for this -- I've been on this forum for quite a while, and I know how strongly people feel about this subject.

Some history, to provide some posters with information that may (or may not) make more sense to them as to why we have done things as we have:

This is my youngest son that we are talking about. When he was diagnosed, my older son was 14. As I began to read about Autism/Asperger's Syndrome, I realized that my older son was definitely on the spectrum, although very lightly affected. The way that we explain it [to ourselves, and anyone else who cares to know] is that our older son had more symptoms of autism as a child, but they did not affect him all that severely. Our younger son, however, had fewer of the symptoms of autism, but they were readily obvious. The older son had the toe-walking, professorial language, lining up of toys, difficulty socially with peers, great memorization skills, etc. that are symptomatic of being somewhere on the spectrum (probably Asperger's). Our younger son had lack of eye contact, lack of shared perspective, stalled in his language development, didn't play well as a little child, lack of ability to pay attention in class, etc.

What I'm pointing out here is this -- we went almost all of my older son's education, up to his first year in high school, without him knowing that he was on the spectrum. We had no help, no therapy, no understanding of why he was different, nothing. We just struggled through it, trying to be the best parents we could. Academically he was fine, but socially he was a mess at times. Then, a very magical thing happened. We moved, he went to a middle school where things ACTUALLY IMPROVED for him, and after that, even with small oddities, he really did fairly well. Socially, things improved, he had friends, he dated, he accomplished what he wanted to -- he did just fine AND HE WAS HAPPY. Now, know this -- we let him know that we thought he had Asperger's when he was fourteen. And yes, he had some depression, he had thoughts of suicide apparently, as a little kid, he seemed confused as to why sometimes his social skills did not produce positive results. His knowledge that he was probably on the spectrum (even though he had no formal diagnosis) didn't really produce any changes for him one way or the other. You could ask him, and he would tell you that it was a non-issue.

So, our plan with our younger son is, and always has been, to either 1) tell him sometime later in high school, so that he can advocate for himself in college, OR, 2) if he becomes aware and starts to ask questions, to tell him when he begins to ask us questions. Sounds fairly reasonable, doesn't it, now that you know the history?

Why the delay in telling him? Why not tell him right away?

Well, it's pretty easy. He is a very happy, cheerful young man. He is approximately three years behind in his maturity, so I questioned whether he was mature enough to even want to know. He has friends at school, is NOT bullied, and does not have need for much in the way of special accomodations in school. We have a very good, open relationship with him as his parents, and we don't feel the need to tell him about his diagnosis unless he asked why he seems different. What if he doesn't feel as if he's different? What if he is comfortable in his own skin? Does he then still need to know about his diagnosis? Yes, but leaving it until the end of high school is probably a good idea FOR HIS SITUATION.

Having said this, JUST THIS WEEK, he has begun to ask me about ADHD (he takes a form of Ritalin) and why he takes meds. I said "Well, you aren't necessarily HYPER, but you do have attention problems in school, and we think that the meds may help you for a while. If you ever think you don't need them, then you we won't have you take them anymore." JUST TONIGHT, he asked us why he went to this certain institute when he was younger, and we said "you went for social skills classes." Up until now, he honestly hasn't asked questions that made us think he was wondering about why he might be different from his peers. Part of that may be because he has a number of peers who are ALSO on the spectrum. Because of his question tonight, though, we will probably begin preparing to tell him about his diagnosis, because IT WAS A NATURALLY OCCURRING SITUATION. Honest, we have put a lot of thought into this subject. We were NOT keeping his diagnosis FROM HIM.

Also, we wondered if he already knew he has a diagnosis. He went to social skills classes up until the age of 10, and there were autism posters all over the place. I thought even then, if he asked me about the posters, I would tell him about his diagnosis. He never asked, so I never brought it up either. Now, apparently, he is remembering certain things about the social skills classes, and so it may be time to tell him about his diagnosis. But, again, what YOU DON"T KNOW, is that he 1) recently lost TWO grandparents (within the last two weeks), and right now we have other grandparents visiting, and it's not the most opportune time to have this big diagnosis discussion.

You also have to remember, we have an older son who never had the benefit of knowing that he was on the spectrum. You also need to know that this older son graduated from high school, dated, had multiple friends, went to college, has done just fine, has married, and is HAPPY. All without knowing about his being on the spectrum prior to age 14, and not caring after that. I will admit that things may be different with our younger son, and so I will probably handle them differently. He has some special issues that are the result of being on the spectrum, but I have not witnessed depression, unhappiness, frustration, and therefore didn't see how disclosing his diagnosis would benefit him AT THE TIME. We based much of our decisions in raising our younger son on our experiences with our older son, and so far it has worked pretty well. We are also in a comfortable position of being able to say that he probably comes from a long line of people on the spectrum -- brother, grandparents on both sides (all undiagnosed) who have had similar symptoms of being on the spectrum as he has. It's definitely PART of his life, but his diagnosis is not ALL THERE IS.

I definitely understand the passion that has been displayed on this issue. But rarely do you know ALL That is going on, and rarely do you have all the history as to why a parent does, or does not, disclose a child's diagnosis. Although I have not disclosed my son's diagnosis in his early years, I do not, and will not, make assumptions about any parent who DOES decide to tell their children about their diagnosis early on. I figure, hey, it's their child, and they probably know best as to how to raise their child -- AND, I don't know their child at all, so I can't really make a good judgement as to whether disclosing the diagnosis to a child in his early years is a good or bad idea.

I just wanted to know the pros and cons of taking a teenager to their IEP meeting. Thank you for your comments on that subject.