Any advice exp w/ aspie child rejecting classroom helper

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First off, thank you for taking the time to read this.

Our 12yo son has had an in class full time aide from kindergarten through 6th grade. The aide is there primarily as an assist to help him stay on task, support his note taking and to monitor his understanding of the concepts being taught. She also acts to prompt him in instances where he begins to experience an emotional outburst. The outbursts are typically centered around him not meeting a self imposed expectation. For example, if he happens to get a 90% on a math test and he expects 100% he will become emotionally distraught. If he manages to calm himself down great – if not, she will escort him from the room so he can collect himself and not disrupt the classroom.

We have never hidden the fact that he is on the spectrum from him. We have done our best to provide him with a supportive loving home. He was initially diagnosed PDD-NOS at 3yo. The day we were given his diagnosis we were told he may never speak. We’ve worked together with him as a family and he has grown a great deal and is a really bright young man. He is now becoming increasingly aware of how he is different from NT people. He is now expressing a lot of concern about how others perceive him. It appears that his biggest perception issue is his aide. He feels that the aide is a clear sign to others that there is 'something wrong with him' that no one else has or needs. He has NT siblings that are both older and younger than him - he often says - they don't need this why do I? He wants the aide gone asap. When we talk to him about how hard it can be at times for him to stay on task and that the aide helps prompt him with that he just keeps going back to wanting her gone. We can see the need for the aide from interactions with him at home. He will finish a task/chore 50% of the way then wander off needing to be reminded by us. However, if it is something he is very interested in he will stick with it to completion. For example he can play piano for hours to finish off a piece he is working on.

In the past year he has told students in his classroom that he won't be around the next day - that he plans to kill himself. Both the school and we have taken this very seriously. Initially he could not pinpoint why he felt this way and his methodology was fanciful (I'll jump off of a high mountain, etc). He's now escalated to telling the school counselor, us (his parents) and a therapist we have taken him to that he plans to kill himself if we he can't get rid of the aide. The therapist we've been taking him too has suggested home schooling and in a worst case scenario hospitalization.

To be honest, we aren't sure if his threats are just his way of getting out how urgent his situation is or if he truly doesn't feel life is worth living. We've asked him if we take the aide away, will his life be great and his answer is yes.

In the evening he seems ok mood wise. He plays with his siblings, practices his music, does what he normally does. This past weekend on Sunday he had a horrible look on his face. When I asked him about it he immediately referred to his aide and how she ‘needs to go’.


The problem with removing the aide has many parts:

1. If he doesn't have the aide, he won't get as much from class as his mind tends to wander.
2. If they take the aide away and it becomes apparent (even to him) that he needs it - it will most likely be difficult to get back.
3. If we pull him from school for home schooling he will miss out on the social interaction that school provides.
4. Now that he has told everyone in the school that he plans to kill himself they won’t allow him out in the hallway alone. Therefore if he has no aide and needs to leave the room to calm down about a bad test grade or whatever – he won’t be able to do so.

This has been a tough experience for all of us. We love this kid with all our hearts and only want him to be happy with who he is. We tell him this all the time, we’ve read books to/with him including John Elder Robison’s Be Different. He has so many wonderful aspects to his personality and his talents with music and mathematics make us so proud of him. It is literally breaking our hearts to see him go through this angst. He has mentioned to us a few times that he hates to tell us about this because he knows it upsets us...UGH!

Any advice and or personal experiences on this subject is greatly appreciated.

Well unfortunatly yes him having an aide does make it obvious to other kids there is something wrong, and so he probably feels left out and it would not be a stretch to think maybe the other kids make fun of him for it. I know when I was in school my mind wandered and having someone there to tell me to pay attention every time it did probably would have just frusterated me more than it would have helped.....Is there any reason you couldn't see how he does without an aide in school?

I mean hospitalization seems a little harsh over him simply not wanting the aide.....As for homeschooling what does he think about that? social interaction at school can be great if you have friends, but if no one really likes you then it can be more harmful. I know that from experiance, at the same time though I doubt homeschooling would have worked for me........not that public school did much good.

For me, growing up with Aspergers (undiagnosed until 24) was hard enough. The aide is definitely a clear sign that something is wrong. There were kids with aides at my school and I can remember how they were perceived. I do understand that this aide is helpful. However my mother is an english teacher, a high school principal and was a dean, and my aunt works with special needs junior high kids. My advice to you would be to throw out alternative suggestions. Like he can go without the aide if he can keep his grades at Cs and Bs. Or....I had the option of taking tests in the library or going to the resource room if I needed help, and for that i would just get up and leave. When anyone asked, I just said I was distracted easily and needed quiet. Ultimately, of course I can't say for certain, but as someone who has seriously attempted suicide more than once, I don't believe these are serious threats. This is just Aspergers, we don't always know how to convey our frustration in articulate terms. "I want to throw myself off a mountain" is your son's way of saying that this is seriously hampering his social life and self-perception. All of the things he struggles with, academically and socially can all be equally harmful if not handled in the best way you possibly can. My suggestion is to talk with the school about an IEP (individualized education plan) and make sure he has the option of asking for help when he needs it. Make sure he knows his grades are still important and you are giving him the chance to prove he doesn't need the aide. Believe me, he will want that chance. School is very important but what I remember most from grades 1-6 is the bullying. Give him this chance and see what he does with it. As well as set up other options besides a "babysitter." He is probably aware enough to realize when he's not paying attention well and needs to go to the library or "resource room" for help and yes sometimes they call it the ret*d room, but the point is it is a much more tolerable option. Feel free to PM me and I hope I helped.

We went through something similar with DS, not with the aide, but with the suicidal ideation. If you go to the Parenting index stickied at the top of the page, there are multiple threads you might want to read. Sounds like the real issue is that your son, like mine did, perceives that AS means he's "broken" or somehow "less than" other kids. I don't think this is really about the aide, but about what the aide represents: the fact that his abilities are not in line with other kids'. My son didn't want to hear that he had abilities that other kids did not, either; he just wanted to be "normal."

I think the book "All Cats Have Asperger's Syndrome" and other books by the same author really helped us a lot in that regard - it made him see his differences as compared to "normal" cat behavior, and we were able to have conversations about how if he doesn't hate cats for being themselves, why is it that he's so hard on himself? He finally has come around to the idea that he's different, if he respects his differences he manages much better and doesn't stand out so much, and he has assets and liabilities just like everyone else. We're not 100%, but things have changed radically from a year ago.

I also think one other thing that helped was that the first openly autistic kid we met just happened to be one of those braniac kids whose parents feared him because at 13 he was already a brilliant computer hacker. DS realized that, even though he didn't have those kinds of talents, autistic kids could be really amazing. Not a bad idea to hook up with other kids on the spectrum for that reason.

In other words, I don't think taking the aide away is going to change things. I think your son really wants not to be "different," and I think you need to help him change his perspective about difference.

I'm a little hesitant to express an opinion on this since I'm no expert, but I will anyway.

It seems to me that the aide, while helpful to some extent, may also prevent him from learning to focus on his own. Ultimately he will not have the benefit of an aide all throughout his life. Maybe the questions you need to ask of your son are not "would your life be better without the aide" but "Will you take responsibility on your own for focusing and doing the things that the aide has helped you with?"

Maybe this is a bias, but I feel there is a risk of coddling your son. Sometimes it's necessary to take the approach that "it doesn't matter that it's hard to focus in class. You have to make a better effort." I had a great deal of trouble with mentally wandering off in class and was a fairly erratic student until I reached high school. What worked well for me was a particular teacher who took the approach of "I know you are smart. I expect you to do better." She didn't provide artificial support. She just demanded I take responsibility for myself and she didn't let me give excuses.

It is possible, too, that having an aide that sets him apart from his peers will ultimately cause more long term harm than good. He may be ridiculed for needing an aide. At his age, his peers can be extremely vicious and the attacks he might receive may haunt him for many years. (I'm still bothered by ridicule I received at exactly his age) And as I alluded to above, he may not learn to be a better student especially when he is being treated as incapable of being so. To some extent, I could see a child thinking "if you are going to treat me as incompetent, then I'm going to behave that way."

If he is actively resisting the aide, obviously the situation is hurting him in some way. I understand you are facing the hard question of "what point does having an aide go from being a positive to a negative value for your son." Without knowing the details of the situation, there is no way I can make an informed guess except from my own experience. You may already be doing this, but it seems to me that talking to your son about what he feels are the practical uses and problems with the aide might be helpful. I would be inclined to talk to him as if he had the full reason of an adult. It might turn out that he has thought carefully about the subject.

I suppose if your son is fairly low functioning, the aide might be necessary just to get him through the day. But from what you describe, he sounds like he functions well enough that, if he were allowed more autonomy and responsibility, he might just rise to that level of expectation.

Good luck.

I think that you should release him from the aide.

For autistic children, attention from another while they are trying to do something is often more harmful than helpful. It is an intrusion, and it may prevent them from focusing and learning skills that they would learn on their own in their own way otherwise. Imposing a system on them in the form of someone else always guiding them in a certain way might hold them back at your son's age, although it was probably very helpful at an earlier age to be told what to do when and where. At this point, since he extremely does not want the aide, you should listen to him and be guided by his strong feelings on this issue. Autistic children can be very independent learners figuring out their own ways of doing things, if they are given a chance. The standard ways will often fail for them, so don't put too much trust in those. It would be good to have your son learn these focusing skills without the aide, so he can have them before he goes to high school.

Some school districts consider a full time one-on-one aide to be the most restrictive kind of educational placement (more restrictive than a special education school). Your son seems to be experiencing that. An aide who is full time, one-on-one tends to interfere with a child's ability to interact normally/spontaneously with both peers and with the regular classroom teacher. Rather than facilitating "inclusion," aides of this type usually serve as a barrier the child has to traverse in order to "reach" the rest of the class. It's not the intent, but it is usually the result.

When children need the kind of support you describe, it usually works much better when there is a second teacher (or even a third teacher) in the room who is there to help anyone who needs it. The teacher (aide) is there primarily to focus on those, like your son, who need the extra support; but when they also help everyone else as needed, and don't hover around one person constantly, it isn't stigmatizing to the child with the "needs." It also allows the child with needs to grow and take responsibility for his own learning much more naturally, since the teacher can "fade" to the background when not needed - or when needed by others in the class.

Talk to your son about what supports he needs, and talk to the school about how he can get it in a more appropriate, less restrictive manner.

I had an aide in spite of my objections for a semester. In that time I went through 3 of them because I treated them as a enemy. You could try letting him have a say in selecting a new aide, but if that doesn't work he might be better off without an aide if he can't get along with them and is going to get hospitalized over it. If he gets suck with the aide when he gets discharged the problem will start all over again. He's likely to eventually doing worse with the aide than without and a more restrictive/supervised class won't help either. If he feels constantly dominated and looked down upon, there are bigger long term problems ahead than his education- which he can always catch up later. By all means enrich his life, but it would be best for his mental health if he rides this phase of his life out and focuses on social interaction, which he needs to develop now or never!

Have you tried any other approaches, such as ADHD medication, for the focusing issues? Perhaps you could agree to "wean" him off having an aide an hour at a time, slowly decreasing the aid time as he learns to be successful on his own?

Thanks so much for the input. I'm going to quote and reply here:

Sweetleaf wrote:

Our only concern is if we take away the aide, our school district will most likely make it very hard to get the aide back. Budget cuts have made it very difficult for kids that need additional assistance in our area.



The counselor suggested this as a possibility and apparently there is a group of kids with AS that work together as a home school group. We are going to look into this some more.

Our son insists that no one teases him - yet. He doesn't always get veiled sarcasm so it is possible that they are and he just doesn't realize it.

smen wrote:



We meet with the school on Thursday afternoon to discuss his options. He does have an IEP currently and we revisit it a couple of times a year. Next year he moves up to the Jr. High so this was already going to be a critical meeting. Thanks for your feedback, it is greatly appreciated.

momsparky wrote:



We did read that prior to posting here. It was comforting to read others experiences and see some of our thoughts confirmed. There isn't a huge support group locally for parents or kids with this issue and this is a great resource. We've spoken with him about the aide and while he insists that if she just goes away everything will be fine - like you intimate, I believe that there will be other issues that crop up and replace the aide as the focal point of his discontent with his 'self'.

Like your son, no amount of pointing out things he CAN do seems to alleviate his desire to just be 'normal'. Hopefully someday he sees value in those things...

Thanks for the book suggestions, reading isn't one of his favorite things to do unless it's about math. It is an opportunity for us to spend more time together though so we will look for those books for him.

jagatai wrote:



We have had discussions like this with him. As is often the case, when he wants something badly he will disregard questions like with a quick yes of course. It is possible that he has thought through the implications but I sort of doubt it.



At just about every stage of his life we have worried about this. We've done our level best to not coddle him and to apply the same rules to him as everyone else in our house. Obviously he won't have this assist for the rest of his life - maybe he knows it's time to take off the 'training wheels' and just start riding on his own. He is one of the brighter people I know, a real 'deep thinker' at times so it is possible that with hard work he will surmount this and the aide will turn out to have been a hindrance to his growth.



Yes we have. Unfortunately when he feels very deeply about a subject he can get irrational as the discussion goes on. He is adamant about one thing - this aide needs to go, no matter the repercussions.

I'm so glad you posted your thoughts - they were very helpful.

btbnnyr wrote:



Everything you wrote was very helpful - thank you.

jat wrote:



This does sound like what may be happening. His aide was swapped out a few months ago and while he was already having issues with his prior aide this new one seems to have made the situation worse. It's possible that the new one is sticking her nose into things more frequently than the prior aide did.



He actually is in a 'team taught' classroom and his aide would be considered the 3rd person in the room. The aide does assist other people but she is there because of him. She isn't supposed to be hovering but only assisting when he is clearly struggling. He goes to several subjects during the day without an aide at all and we had been weaning the aide but apparently not fast enough for him.

John_Browning wrote:



He has been very rude to both his prior aide and his current aide this school year. It certainly sounds similar to what you felt.



Thank you for your thoughts - this was very helpful.

I'm sure I will be back Friday morning with an update on what the school district suggests.

I think it's good that your son wants to do things independently.
I understand your fears because I also have an autistic son. I don't know how school works, but it would be interesting just try to take a test without his aide and see if he can do it without aide. If he feels confidents and succeeds, it will be great!
Aide could be switched-off gradually...

Here is something to think about....

Maybe it's ok for him to get a bad grade to figure out what is important to him and how to resolve it.

My son is 12 and melts down violently when stressed in school. We eventually decided that homeschooling was the best option. He would like the social aspect of school, but he misses what he fantasizes school is like not what it is really like. (does that make any sense?).

Anyway, I am of the mind that at some point it is up to him to decide what's important, and grades may not be the most important thing.

First of all your son sounds very much like mine, and my heart goes out to you over the suicidal ideation which can be so terrifying and heartbreaking to hear coming from your child.

I couldn't agree more with Jat. It sounds like the aide is working with your child incorrectly. Without officially dispensing with the aide, can you make a plan with her, the classroom teacher and your son for the aide to completely back off your son for now. For her to shadow your son when he needs to leave the classroom for a break, but not to otherwise help him in any way for a week or several weeks, perhaps not to even speak to him. In the meantime she should be helping other children, particularly NT kids, so that your son can see them receiving help and that being OK. After the trial period you should all meet again, and discuss how things went. How well was your son able to manage? Did he notice the other kids receiving the aide's help? How did he think they felt about the aide? (he would probably need to be "walked through" the process of noticing that other kids get help too and that it doesn't mean they are stupid or weird etc.) Would he be willing to accept help only with certain areas where he is struggling? Let him dictate when and exactly how the aide will help him. Then begin another period where the aide is only allowed to help with the agreed upon things in the agreed upon ways, and she continues to make an effort to show your son that she helps ALL the kids in the class so that her assistance becomes normalized instead of ostracizing. In the end you and your son may discover that he doesn't need full time help anymore, or you may realize he still really needs the help, in which case you will be on your way towards him seeing that the aide isn't necessarily embarrassing, and hopefully the aide will have learned a new less isolating/humiliating approach to working with your child.

We had to take a similar approach with both of my sons. Around grade 4 they started refusing any help from aides or their classroom teachers. They had both gotten it into their heads that help (particularly from an aide) = being a stupid, bad or weird kid, an attitude they surely picked up from the other kids. With one of my sons, we discovered he needed less help than we thought, and was able to do much better socially with the difference of the extra assistance removed. With our other son it was completely the opposite. He really needed the help and it was so hard to see him refuse it, and to watch his ability to learn plummet and him make even worse social blunders and have more frequent emotional outbursts with no one to help him, however he needed to make his own choice, and he has slowly, slowly gotten used to the idea of more help again and is accepting more this year than last. The teachers and aides have worked really hard to offer him help on his terms, and to always help a variety of kids and not to single him out. This has been crucial in him beginning to accept the help again, and to realize that receiving help doesn't mean he is "dumb".

So I would not give up his aide in an official capacity until it was clear he could do without her, but I would have his aide back off completely. Whatever she is doing now, well meaning as it may be, is making your son absolutely miserable. He needs to be helped by not being helped (at least for now), but by being shown that other kids get help too while being allowed to test his independence, and then perhaps the help can very slowly be reinstated, but on your sons terms.

A lot of good points have already been raised, so I am going to focus on a different angle that hasn't reaaly been emphasized yet.

Your son is 12, and he needs to feel some level of control over his life, to make choices and have them respected. He is striving for independence, as youth instinctively do.

While I agree the aid may not be the real problem, it is where he has focused his frustration, and I am inclined to think he needs to experience what happens when his choices are honored, even if they prove to be bad choices.

This is about the hardest thing for us to do with our Aspie kids, to let go, and let them struggle, but at some point on some issue we all have to do just that.

There are worse things in life than a few bad grades or failure to maximize academic learning. There are much more important lessons our kids need to learn as they grow up than when to use a comma. They also need to test their wings, learn how to handle both victory and frustration, and learn how to proply identify the source of their frustration.

It is so hard to make that transition with our kids, because everything when they are young is about conforming the world to their needs, and we never want to go back to what it was like before we learned to do that. But bit by bit you have to, or least we hope to have to, because that is part of raising a child to someday be independent. Some of our kids can never be independent, but he won't know and you won't know until you've let him try a whole bunch of times.

So ... I think he's screaming at you loud and clear: let go a little!! ! I'm growing up!

I like the ideas of smen and jagati. It may be that he's telling you it's time that he be responsible for himself. This is not to say that there won't be fall-out if the aid is gone, but I think it will give him the experience of learning how to handle himself. That will be very difficult at first...on the other hand, you don't want the alternative to be him not learning to handle himself. What I always tell my daughter who is always very clear on the issue that she has problems....but was diagnosed at 12 and seemed somewhat relieved to finally understand the reason for why she stood out so much), is that what I want for her eventually is to be able to be a successful adult human being....a happy human being.

She's never had an aid. Could she have benefited from one? In some ways I think she could have. Also for several years she came to my school and when worse came to worse, I was her aid....I'd leave my classroom to talk to her...or sometimes just to meditate with her in the school-yard....which helped. But she would have hated to have one in middle school. She still calls middle school the "worse years of her life", and it was because of bullying, feeling different, and knowing she didn't fit in. It had nothing to do with grades. If she had had an aid, in a mainstream classroom, I know she wouldn't have managed as well as she did. She already felt "different" enough because of her 504 plan and the adjustments they were making for her every day.

She takes medication for distraction....that helps some. She thinks it helps a lot, so I think the combined actual help along with the placebo effect...she is able to do okay. She's not great at school, but she knows it's important, and she loves going. She really loves the social interraction.

I think if he instists, you aught to respect his wishes. Like smen said, put something in place, Like if you can keep your grades above C's you can be without an aid, but if you can't on your own, we will reconsider. Maybe get that deal in writing even. Then see how it goes. If he's distractable, consider medication...it may help. My daughter feels smarter (her words) when she's on it because she isn't always losing her train of thought or forgetting what she's going to say. I think if it's this important to him, and he's the adolescent (and I think we have to be aware that noticing how others see you and wanting to socialize successfully is important right now), then see if it can work. I used to get so worried, but sometime just this year my brain switched over to realizing it was soo important to her that I have FAITH in her abilities instead of always worrying about her disabilities/weaknesses. I've been working on that one, but it's a hard one.

Bethanie

Just another thing to add, maybe the suggestions about getting a different aide could help......I mean from what I saw at the school I went to some of the aides seemed very over-bearing and critical towards the special needs kids they 'helped' I just could not help thinking it was probably doing more damage having some strict lady with a nasty look on her face hovering over someone while they are trying to do their classwork to nag them every time they do something abnormal.

So it could be this aide specifically is the problem and not having one in itself.