Improvement in some areas/difficulties in others

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Hi All-

My 5 yr old son (diagnosed PDD-NOS/possible Asperger's/ADHD) is becoming a bit more aggressive lately. He is really progressing in many ways such as speech and having more initiative. When it comes to other kids, he mainly used to just seem oblivious to them, or avoided them. But now when he is around them, I am sometimes noticing that he is making mean noises or faces at them. I thought it might have been because he was jealous of me showing them any attention, but the other day I noticed it when my husband was with him way across the playground, he made a mean noise at a girl, and I was not around. He has also gotten more aggressive toward me and my husband. (not everyday, just some days)


As a baby and a toddler and even up until about 4 yrs old, he was pretty mellow,and he has never had meltdowns like the ones that I have read about here on WP.At times I was really concerned about his low energy levels. He had hypotonia, and I think he still does, but he is becoming physically stronger. It seems as though the stronger he gets, he is a bit more hyperactive then he ever was. He eats pretty well and healthy, so I am not sure that it is related to diet.

And also as his speech is improving by leaps and bounds, he is doing more and more verbal stimming. I had read that usually as speech improves, the verbal stimming begins to diminish. In my son's case, it seems that the better his speech gets, the more loud and annoying noises he wants to make. He is also asking tons of repetitive questions and telling us what he wants us to say.

I know I am covering a lot of issues at once, I am just wondering if any of you saw your kids go through any stages like this when they were around this age. My son has always been fairly easy to manage, and I just don't know if I can just keep expecting things to continue on this track.

Any input would be greatly appreciated!

Do you observe during your son's speech therapy sessions? Your son's efforts to tell you what to say may, in fact, be that he is modeling the behavior that he perceives his speech therapist is doing. He may think that is "normal" social interaction. If the speech therapist is telling him to say certain words, sounds or phrases, he may think that is the way people communicate with each other. It could be similar to a "game" that the speech therapist "plays" with him when working on his speech during sessions.

As far as the mean noises and faces, do you know whether he is feeling mean or aggressive towards the children involved when he makes those noises and faces? He might not know that they are mean. The noises might be stims, or just sounds that he enjoys. The faces could be faces that he doesn't realize what they look like - many individuals with ASD have trouble "producing" expressions that correspond with the feelings they are trying to express, so, for instance, smiling for the camera produces some pretty ... unusual facial expressions. On the other hand, they could be deliberately "mean" and designed to keep others away from him. Is your son showing increased signs of anxiety? As children get older, and are expected/required to engage in more social activities and participate in more situations where things are less predictable, their general levels of anxiety tend to increase. Other small children can be sources of intense anxiety, and keeping them at a distance (by making faces and noises) is sometimes quite intentional. It isn't being mean, per se - it's a form of self-survival. Your son's aggression towards you might be the typical aggression one would expect to see in a younger child, that your son may not have displayed, either because of his PDD-NOS, or because of his hypotonia (or both). Either way, it should be addressed as any aggression - you need to make sure to stop the aggression while trying to determine the root causes, and encourage your son to talk to you about whatever bothers him, and find alternative ways of expressing his distress. If you need professional help with this, don't hesitate to get it - things like this can be little things at the beginning, but if they aren't worked with when a child is young, they can become quite big.

The "hyperactivity" to which you refer is probably a normal result of his growing strength. When a child is hypotonic, he is too weak, in his core, to do as much running around as his peers. As this is corrected, he becomes more physically competent, and his activity level would be expected to increase. If you've been used to a relatively sedentary child, it can be a bit of an adjustment to have your child become a more typically active one.

Every child is different, and one child's trajectory is not going to be the same as another's. Most go through stages when they are easier and not-as-easy - whether they are on the spectrum or not. So no, you can't expect your easy-to-manage child to stay easy-to-manage forever, and that has nothing to do with his PDD-NOS - that is simply because that is the way things are! LOL!

Thanks Jat! Since he is an only child, I have nothing to compare him to, so many times, I am at a loss as to what is "normal" and what is spectrum behavior. Some of it may be a combination of both. I agree with you that we need to tackle the aggression while he is young. The good thing is that he is becoming more and more verbal, so I can sort of discuss things with him more. He is getting a little better at telling me how he feels (not totally, but some.

As far as telling us what to say, here is an example----He will say "Mom, I want you to say that I drive a yellow volkswagon bug." So I will say it, and then he says "say no, _______ doesn't drive a volkswagon bug, he drives a red Ford truck." Some of it seems harmless and like a game, so I go along with it. But sometimes he will tell me to say something that we both know isn't right. Like for instance, "I want you to say that Dad is taking me to McDonald's today" when we both know that he is not. Anyway, it could be what you said about the speech therapy. I haven't been able to sit in on it. Speech therapy is great in many ways, but sometimes it does seem to make them say things that don't sound natural.

As far as the other children, Here is an example. The other day, I took him to the swimming pool. We were the only 2 in the pool. Then a twin boy and girl that we did not know (my son's age ) and wanted to play. They were very social and were jumping all over me like they knew me. Anyway, I thought it was cute, and I was trying to gently encourage my son to interact. But, instead he kept making grunting sounds and silly noises instead of talking to them. He is verbal, so he is capable of simple conversations. In that case, I thought it seemed like jealousy.
Sometimes it just makes me want to be anti social too, because I don't know what we are going to get. I don't take him to a lot of places, and I try to avoid a place if it is too crazy, but I feel like he needs to get out some because otherwise he is just at home with me all of the time! I guess we just have to keep muddling through!

As far as a professional, what type of professional would you recommend? A psychologist?

Well, thanks for posting. It definitely helps to share with someone who understands.......

Do you think that when your son tells you to say that Dad is taking him to McDonald's, it's because he wants to go to McDonald's? Is it his way of requesting a trip to McDonald's?

You might want to ask the speech therapist to talk to you for a few minutes (or longer, actually) about what she is doing with your son, so that you can reinforce appropriately what is going on in speech therapy, and so that you will better understand things that your son "brings home" from his sessions. It is totally appropriate for the therapist to discuss with you what she is doing and how you can support the therapy at home, especially if you are not in the therapy sessions. If you are not bringing him to his sessions, you should speak to her on the phone - if you generally communicate by email or through a communication book, tell her you would like to discuss his therapy in that way, and ask whether you should schedule a phone appointment for that purpose.

Has your son told you why he responds the way he does to other children? It is possible that he is trying to keep them away, or that he just doesn't know how to play appropriately. You might want to look into social skills groups for him. It's important to find a good one, but they can be extremely useful for teaching children how to interact appropriately with other people, and for young children, it can be a way to make some "first friends."

If you need professional guidance in working with your son, a psychologist, or a clinical social worker with lots of experience working with young children on the spectrum is key. What you need, more than the actual degree, is someone with the expertise - whether the person has a Ph.D, an MSW, an M.Ed or an M.D is irrelevant - you need someone who knows what they're doing and understands our kids!

Curious:
Next time he asks you to say something you know is not truth,
point out to him
"What you are trying to have me say is not a truth right now. So why do you want me to say it?"
The answer might be enlightening.

Jat, my son does know how to ask when he wants something or wants to do something, so I am not sure if that is what he is doing when he says something like that. As far as social skills and play skills, these are his biggest struggles. My son is so social and charming to adults, all of the teachers and therapists at school just love him. It is like he is a little adult. Play therapy is definitely something I am trying to get into. My son does not and has never played very well by himself or with others. I think this is part of the problem sometimes. He is bored and doesn't quite know how to entertain himself, so he likes to stir things up to get things going. At least I think. So yes, I do believe play therapy or social skills might help.

He has been in the special needs program in the public school system since he was 3 yrs. old. He has had an IEP in place since he was 3, LOL! So, the school is very aware of the issues, and they are always working on the play skills with him. It is just so difficult with him though. He doesn't play with anything! He used to play with little toy cars some, but now even that has gone away. After school really all he likes to do is listen to music, watch videos (sometimes) and draw on his etch-a-sketch. All activities by himself. I let him do this quite a bit because he is going to school (special needs kindergarten) full time. He seems to enjoy school. He never complains about going, and when I pick him up in the afternoon, they always say he had a good day. I never get calls from the school to pick him up. So, my guess is that he is trying very hard at school, and then when he gets home maybe the stress comes out?

Oddfiction, I hear you about the non truth thing. I will try asking him. Most of the time I just say well, you know that is not true, but we can pretend. Sometimes he is happy with that, but sometimes he will get a little upset.

Oh, and Jat, he does get speech therapy at school, so I guess I need to schedule a meeting with her.

I have also generally been of the opinion that once the school day is over, if my child needs to just chill, that's fine with me. The school day is long, and that's a lot to keep it together for!

The thing with play therapy, is that even though it's child-centered in a sense, it's adult centered in that the child is generally interacting with an adult. Many children on the spectrum do really well dealing with adults, but they don't when dealing with other children, and the older they get, the more important it is for them to learn to interact with age-mates. Social skills classes are designed to help children learn those skills. If you can find people in your area who have used local resources, they are the best ones to direct you to good programs. Some are definitely better than others, and bad ones are not worth your time or money. Some places call it "social skills," some call it "social thinking," some call it something else, but the crux of the matter is that children need to learn how to interact with each other in ways that will allow them to function adequately and happily. It doesn't mean they have to have dozens of friends (they won't) or win popularity contests, but they should be able to "get through" without having major issues all the time. They have to learn the language and culture of this world where they live, and social skills groups help them with that. Good ones do that in ways that are fun, and the kids enjoy them.

It's good that school understands your son's issues - the down side with some schools is that they start to try to cut back on supports - some as the children enter "real" school, some a bit later. Don't let them do that unless you are sure that your son is really ready for those supports to be faded. Supports will, in all probability, need to be supplemented as your son enters middle school - I know - that's an eternity from now, but it's a tough transition, and schools generally try to pull supports before then, since they're logistically harder to provide.

Making an appointment with the speech therapist sounds like a good idea. For some reason, once kids are in school, the speech therapists seem to think the family doesn't need to know what's going on. Weird.

I think you are right about the play therapy. I was just thinking in my car that play therapy does him no good unless there are other children involved. So I think I need to do some research and find a good social skills class. The only thing with those are that they are expensive, and insurance doesn't cover it generally. I did take him to 4 sessions of a social skills group last summer ($200 for 4 sessions) The other problem is that if the other kids are on the spectrum too, it sorta makes it difficult when they all have social issues. I wasn't sure if we got anything out of the sessions. It is hard to tell sometimes. I just try as much as we can to go to places where I know other kids will be like the playground or to storytimes, etc.... I just sort of do my own facilitation with him and other kids. But, I think it would be great if someone else could do it with him. I also hired an occupational therapist last year to go into the daycare that I sent him to 2 days a week to see if she could help him interact. It was $100/ 1/2 hour! She did bill it as OT, so insurance covered it, but I just can't get over the cost! But, I think in the long run, this is a very real issue that needs working on. I don't care if he is ever a social butterfly, but I just want him, like you said to be able to get by.

As far as school, I don't know what the future is going to hold for my son at the public school. For right now, I am happy, but as time goes on, my fear is that they are going to want to keep putting him in special ed because he likes to make noises in class. Hopefully, with some work, he can learn to control it, but I don't know. Fortunately, we have been blessed with me being able to be a stay at home mom, so I am not ruling out home schooling or private school (smaller class size). I am just keeping my mind open at this point, but I will find something else if the public school is not going to meet his needs. Homeschooling is fairly popular in the area we live in, and they do have lots of groups to do social things with.

Thank you for taking the time to chat. It does help to share ideas,

This might be too much to hope for (LOL!) but, does your school district have an autism specialist - either on staff, or a consultant? If they don't, they should. The autism specialist should be providing autism support, at school, which would include something along the lines of social skills or social thinking. It would include flexible thinking/problem solving; idioms/figurative language; team building/working with friends/partners - the things that the other kids seem to do naturally. Sometimes, an OT or SLP does this kind of work with kids, but they have to have more training than just basic OT or SLP training - they have to have additional training in the needs of individuals on the spectrum. A specialist also generally consults with the regular teachers (even special ed, OT, SLP, etc) about the particular needs of the ASD kids on her case load. They can also help at recess and other "nonstructured" times, to facilitate interactions amongst children.

Yes, the school district has an autism support person, but I have not talked to her this year. School just started at the end of August. I am a little concerned because they are now scheduling IEP meetings based on birthdays, and my son's birthday is in July, so his meeting will be in April. Well, hello---the school year will be almost over! I guess I will have to schedule my own meeting if I am going to discuss my son's progress.

I am definitely going to push for all of the supports I can get, and request that we at least try mainstreaming him before I pull the plug on public school. So far they have been great, and we have not had any problems. But, as he gets older, I don't know how it will go. One year at a time, right?

The annual IEP meeting can be whenever they want, I suppose, but ...

They cannot allow more than a year to elapse between IEP meetings, so if your last IEP meeting was last fall, you need to have another one this fall, and then they can switch the "annual date" to one that is in less than a year. Also, they are going to have a problem with a late spring date for your son, since he is on the spectrum. Your son falls into the group of children who are supposed to be considered for ESY (extended school year) by the end of February, with a decision being made by the team and a NOREP being issued by the end of March so that if there is a disagreement, an expedited due process can be completed timely (I am assuming that you are in the US - if you are not, please disregard everything I've said!).

The concept of the annual IEP is one that schools present as if it is the rule. The rule is not less than once per year. If you need an IEP meeting more often, you can have one as often as necessary. I know of someone who had monthly IEP meetings until things were straightened out in her son's educational setting. The school wasn't thrilled, but they can't refuse to meet with a parent who considers it necessary, especially when there are issues that are clearly coming up in the classroom routinely.

Definitely take things one year at a time, but as you do that, try to keep in mind where you hope your son will be. The future comes very quickly, and if goals and objectives are not well planned, he will not be getting what he needs to be where you hope he will be - and where he is capable of being. So many schools think "special education" means a watered-down curriculum, instead of teaching children how to approach things differently so that they can learn everything anyone else can learn, just in a different way.

Our last IEP meeting was in April or May, so they will be in the one year time frame. At this time, there are really no pressing issues, so I don't feel that I need to call one at this time. Of course, the lack of interaction with his peers is a definite concern, but that is an ongoing thing.

Right now, we seem to have more issues at home than at school, which I guess in some ways is not so bad.

Thanks for all of your guidance.

I am not sure what you plan to accomplish with social skills classes if your child doesn't want to be social. Learning how to play games with other children isn't going to be of much use if your child doesn't want to interact with the other children. I would agree that your child probably needs to learn the phrase 'please don't bother me right now', as it would be preferable to growling. But spending ridiculous sums of money for a play date that your child isn't interested in seems a bit silly to me.

Tracker,

I totally agree with you, if that is the case. The problem is, with a five year old with limited social skills, it's hard to determine whether his behavior is due to his not wanting to play with other children, or due to not knowing how to do so appropriately. If he doesn't want to play with other children, learning how to distance himself appropriately, as you suggest, is essential (it will not be good for him to be "the weird kid who growls at everyone"), and an entire series of social skills classes is not necessary. If, however, his behavior stems from being confused by other children, and that is why he is trying to keep them away, a good social skills class might be really useful for him.

I agree with both of you.

Tracker, it is hard to tell if my son wants to be social or not. That is why for the most part, I just ask him if he wants to go places like the playground or McDonald's, etc.... and there are usually kids there. I always ask him "Do you want to stay and play, or go home" 9 times out of 10, he will want to stay. So, I just try to gently encourage interaction, and teach him social skills the best I can. My hunch is that he just likes going places and playing some on his own. Sometimes, he seems curious about other kids behaviors, so I just try to explain things to him. But overall, it doesn't seem like the kids are the reason he wants to go places.

Jat, I know what you mean. At this point, I think maybe him being in a small group of kids might be less intimidating for him, but maybe I can find that without having to pay for it. I do agree though that he definitely could use some help with learning how to just get by around the other kids. The older he gets though, I think the social skills become more challenging.

The other day, I was proud of him because we had been around a little girl and boy for a little while, and when it was time to go the little boy wanted to give my son a hug. My son did a good job saying "I don't want to hug, I just want to say goodbye" I praised him and told him that it was okay not to want to hug, and that he did a good job using his words.

Wow! Your guy did great!

A small group of kids, who he sees repeatedly, so he gets to know, is probably a good way for him to learn how to interact comfortably - and to figure out whether he wants to interact. The whole thing of self-isolating out of choice, versus self-isolating because one doesn't know how to interact successfully, is a difficult one to figure out. Try to get the school to put together a group, led by the autism specialist. The advantage of it being school-based, is that the other kids would also be kids who your son will continue to see on a day-to-day basis, so it could, if successful, help make for better situations during recess, lunch, and other "non-structured" times at school.