New here - suspect Aspergers in son

[redegg]

Hi, all...

I'm glad I found these forums. My son is almost 7 and oscillates between being the most marvelous creature on the face of the earth and being a bit of a nightmare. Although husband and I have had some suspicions about things being not quite right with him since he was about 3, his teachers and doctors have said that although he's definitely "odd," they don't think it's anything clinical. We've never pushed it though, we've never clued them in to *all* the behaviors, and at this point in time I'm wondering if it's Aspergers.

We have an appointment with a family therapist tomorrow who often sees children with Aspergers and have told her about our concern. That wasn't why we scheduled the meeting though. My son has had some frightening episodes of depression, the kind of world-weary, soul-breaking depression that I myself take a lot of medication to control. He's just a little kid...he shouldn't have these kinds of problems, shouldn't be saying that he wants to kill himself. And yet there it is. It breaks my heart.

The list of odd behaviors, in addition to the depression, is long. I've set myself to task in writing the list to take with me to the therapist's office, and have been surprised at how many things there really are. From the strange sounds he makes all the time to the fantasy world that he occupies to the obsessions and lecturing conversations to the volume of his voice to the aggression he demonstrates when he's frustrated to the difficulty he has getting along with his peers. Since he's been 3 I've been puzzled more and more by his behavior, and reading about Asperger's, as sad as this sounds, has been an enormous relief because it gives me a context in which to *understand* what's happening. It gives me hope that there really are tools out there for dealing with the problems posed by his behavior and that maybe our family can adjust. All I know is that right now our family is teetering on the edge and we really need to get a grip on what's happening.

Thanks for letting me vent about this a little bit. I feel like people here will probably understand what I'm talking about, and that in itself is a huge relief. Best wishes to all.

 

[Marguerite]

I'm not sure how we're going for time, my computer's been down and I've only just come back to the site.

But something you can take with you, to speed up your process of trying to list things - go to www.childbrain.com and do the online Pervasive Developmental Disorder (PDD) questionnaire. You can't use it to self-diagnose, but you can print out the results whatever score you get, and take it to the doctor. It is a good way of asking you questions about things you might not have even considered.

The depression you see could be familial, or it could be directly connected to the huge strain of living with something like Asperger's. I know I've seen depression in all three of my younger kids. difficult child 1 & easy child 2/difficult child 2 were also both cutters, so far difficult child 3 is not but he picks at his skin a lot.

Your depression - has anyone really studied you to see why you have the problem? Sometimes depression just IS, and as a result sometimes therapists don't actually look too hard, if they can't find a fast, obvious cause. But Asperger's is also familial and it is especially difficult to diagnose in girls. Also, attitudes and diagnostic criteria have opened up in recent years, so what chance is there that you have some Asperger's traits yourself?

We have good friends at church, we get on very well with the family (not surprising, really - Aspies tend to find other Aspies as friends). I think they are such good friends with us, because they have never been judgmental about our kids when others were. And why did they understand so well? I think because at some level, they felt a connection, some sort of similarity.
The father in this family is a little older than husband & I but is increasingly getting caught up with self-diagnosing Asperger's. There does not seem to be sufficient Aspie traits in the daughters or the mother for a diagnosis, but all are exceptionally bright (also connected) and there are a few odd traits in them too. The older daughter has been good friends with difficult child 1 & easy child 2/difficult child 2; the younger one was a classmate of difficult child 3 when he was in mainstream.
Every time I see this bloke, he is telling me about some new Aspie trait he has finally recognised as being Aspie. The latest one is a sensory problem - he can't stand being around other people eating or drinking because he can't stand hearing the noises other people make. I've noticed at church when everybody else is having a cup of coffee or lunch, this bloke is inside doing the bookwork. We never realised he was avoiding us all deliberately, because he will come and talk after coffee or after lunch, when people are just chatting.

husband has his own Aspie traits too. We live with it, there's probably no point for us in chasing this up further (same with our friend) because as you grow up with this, you adapt. With or without a diagnosis. And if your son has depression now, that is something he has a better chance of learning to live with, than if he had a happy and carefree childhood then suddenly WHAMMO got hit with depression in his teen years. It's not "you don't miss what you never had" because he will have his happy moments. But you learn to cope with the stuff you have had to live with the longest.

Of course this doesn't mean you don't try to help him. The more you can help him, the better he will be able to adapt and cope.

I can look back on my own childhood and freely tell you, I was miserable. Looking back, I probably had depression. I certainly had a lot of stress. A lot of pressure. My stomach was constantly in knots. And because I was a child, I thought it was like this for all kids. I would hear adults say things like "Youth is wasted on the young" and "Kids don't appreciate how good they have it, I wish I could go back to the carefree days of youth," and at first I would think, "If this is carefree, then what the H is going to hit me when I am an adult?"
Then I thought, "I know I am miserable. There are some aspects to childhood that I value, and one of those things I value is my understanding of other children. I never want to lose that. What is it that happens to adults, that makes them so insensitive to kids? I never want to be like that."
I made a conscious decision to not lose my connection to childhood, even though I was unhappy.

And you know what? I discovered that a childhood attitude can be enjoyed in adulthood. I've been happier as an adult, because I adapted. I still had a lot of the same stresses, plus a few different ones, but I WAS IN CONTROL.

A lot of the depression and stress in Aspies, is lack of control. Not being able to understand the social rules is also a big part of this frustration at lack of control.

From your descriptions, your son could have a number of problems. But it does seem to me tat a lot of his behaviours can be explained by his desperate need to have some control over what is happening to him and around him. That control will come with understanding, and really it is understanding he wants and needs and can't have so readily because he lacks the social skills to comprehend.

So to help him, work on the social skills. Use social stories to help him, role-play stuff with him to help him practice how to behave. Read "The Explosive Child" by Ross Greene to help you understand a different and more productive way of helping him, given the problems you describe. And also help him by letting him have control where it doesn't matter so much to you. For example, if he wants to run out into the snow and you know making him come back to put on a coat will cause a rage - then don't. It will be cold outside, just wait by the door with his coat and hand it to him when he comes back. Or instead of standing in his path saying, "Put on your coat before you go out to play," you ask, "Do you want your blue coat or your red coat?" This way he has been presented with choice. And you both win, because it doesn't matter what colour, he IS wearing his coat!

Some planning ahead is needed as well as a group strategy. You need all those interacting with him at home to be on the same page as you. If any adults are still in the "because I said so" mode, they will find that he will focus all his anger and frustration on them. So it is in their interests to work with you on this.

Good luck with the appointment. Once you have a diagnosis, you can begin to get help for him at school, in practical ways. Get a report in writing form the doctor and get it scanned to your computer. That way you will always be able to access a copy.

Marg

 

[TerryJ2]

Gosh, all those things and the dr's won't say it's anything clnical? There's something going on there. Then again, you did say that no one has really seen the Big Picture yet.

Good for you for making a list.

One thing to remember, which you probably already know, is just because a child does something once doesn't make him or her "clinical," which may be why you're hearing a dr say that. You have to watch for repeated behaviors and the magnification of behaviors. All kids have tantrums. Many kids talk to invisible friends. Many can't control the volume of their voices. But not consistently and constantly, Know what I mean??

Redegg, stick around. This is an interesting and supportive place. Create a profile/signature so people like me can just glance at it and immediately remember the age, sex and possible diagnosis of your child, whether s/he is on medications, etc.

Welcome!

 

[susiestar]

Welcome!! From the list you wrote I agree that Asperger's is a possibility. It sounds much like my son, though by 7 my son was scaring us with his violence. He could not be left alone in a room with his little sister for even long enough for husband or I to use the restroom! If we were home alone with the kids we had to take the same-sex child into the restroom with us or my daughter had bruises from him.

It is really important to get help and support started soon. The earlier it starts the better the outcome. My son got more and more violent, esp toward his little sister, to the point he couldn't safely live with us. He ended up with my parents and now, at 18 is an awesome, great big bro to both his sibs. He is very protective of the little sis he abused, much to my amazement! (Recently he wanted to come and speak to the doctor who is insisting his sister's movement disorder is a result of "anxiety". He is very angry that she is not being properly treated, as are we. I NEVER expected him to want to have a good relationship with her, much less to want to advocate for her!)

It is important to get an IEP process started at school, as well as to get other things started. For one thing, school can help with social skills and with sensory issues like how loud his voice gets and any problems with certain foods, textures, tags or seams in clothing, etc... Don't let school tell you they are already doing all they can. If things get worse suddenly the IEP gives him legal protections under federal law. It is important to make sure he has those in case he needs them.

As you get things ready for the new therapist (abbreviated therapist here on the website), consider also getting an appointment with a child psychiatrist. There are medications that can help treat our Aspies, but they MUST, repeat MUST MUST MUST, be administered by a board certified child and adolescent psychiatrist(called a psychiatrist on our site)! Pediatricians and family practice docs are in NO way trained to administer these medicines. There is a wait of as long as 3 months to get in to see a psychiatrist, so getting a referral as soon as you can is important.

Another thing to consider is writing out a Parent Report. It is a report that tells all about your child and lets anyone who is helping you with your child get all the relevant info in one document. You don't have to give every "expert" the entire report, it is pretty easy to pull out the segments a teacher might need, for example. You can find the format in the FAQ/Board Help section under Parent Input/MultiDisciplinary Evaluation. (http://www.conductdisorders.com/forum/f7/parent-input-multi-disciplinary-evaluation-10/ ).


Hugs,

Susie

 

[redegg]

Thanks so much for the thoughtful responses!

I took the childbrain questionnaire this morning for my son, and scored a 127. Ouch.

Speaking of ouch, violence *is* one of the symptoms that concerns me. Although the episodes do seem to be getting less frequent, there is still some hurting that goes on when he has a freakout/tantrum/meltdown. The day before yesterday he slapped me in the face in a Starbucks as the cashier looked on. Talk about humiliating. There have been periods of time where I've sported a lot of bruises and other kinds of injuries from his meltdowns.

Ironically, the flip side of the coin is that he and I are *very* close. When he's sweet, he's *very* sweet. When he's horrible, he's *very* horrible.

Now that I'm reading about Aspergers I see some signs in myself as well as in my husband, so I dunno, maybe his behavior is inherited from us. My husband is a very anxious person, very socially isolated, and as a result our family is pretty isolated. So at times I wonder how much of my son's behavior is "nature" versus "nurture" just because he hasn't had the opportunity to develop the social and motor skills that other kids have mastered by now.

Anyway, I really value having a place like this to talk about all of this, because I can't really talk about it with my husband. Every doubt or concern I have about my son is taken as a criticism of husband's parenting skills, which really isn't helpful for anyone. I'm reeeeaaaalllly looking forward to our "therapist" appointment tonight because I see it as a jumping off place for getting help for all of the relationships in our house.

Thanks for the warm welcome.

 

['Chelle]

Just wanted to add my hi! My son too started to have a lot of problems at 7, and also got the well there's something odd, but no diagnosis. I know that at one meeting Aspergers was tossed out by one person at a school meeting back then, but she was a new TA and I think was disregarded by everyone. I will have to say I think I was totally overwhelmed and just thought that all the "professionals" would know what they were doing and went along. Took until my difficult child was 11 and finding this place for me to say hey this isn't right and get him re-evaluated by a specialist. He's doing pretty good now, almost 17 . Anyway, I just want to say make sure you become a strong advocate for your difficult child. If your instincts are saying something is going on, something more than likely is. Get him evaluated by the best you can, push for accomodations at school. If he is Autism Spectrum Disorders (ASD), earlier interventions are better. Saying 'if only' doesn't much help now, so I try not to, but I do believe difficult child and his feelings about school would have been much different if I'd pushed when he was 7.

Welcome to the site, and I'm sure you'll find lots of advice and an ear to vent to when you need it. It's a great bunch here

 

[DazedandConfused]

The earlier the better. If you suspect AS, definitely pursue that until you are satisfied either way. My son is almost 14 and I'm just now strongly suspecting AS. He doesn't do some of the classic Aspie behaviors (obsessions with certain subjects, taking things apart, and few if any friends), but others he has in SPADES. I did have one therapist suggest AS about five years ago, but because of his age, his behaviors didn't stand out so much. She had a brother with severe autism and I think was knowledgeable enough in the PPD area that she was able to see the signs early. I didn't go further with it because at the time because my daughter's troubles were zapping so much of my energy and focus. However, he was seeing a psychiatrist to get medication for aggression and irritability which can also be now attributed to his mood disorder along with AS. So, we're now on a waiting list for a university/teaching hospital psychiatrist to get the evaluation process started. Unfortunately, our regular psychiatrist suddenly became ill and had to leave his practice. Even though, I think I would have still taken this route for diagnoses.

I also agree with Susiestar regarding medications; prescribing these types of medications are WAY beyond the scope of GPs and pediatricians. I've even spoken at length to an adult's psychiatrist who told me that prescribing psychotherapeutic medications to children was even beyond HIS scope of knowledge and training.

There are many great books on AS. I've been reading The Complete Guide to Asperger's Syndrome. I see my Son on many of the pages. The Explosive Child is another good one and was suggested by Marg.

Welcome and stick around; this discussion board has been the single most important resource in my journey to raise difficult children.

 

[trinityroyal]

You've received some great advice and input from others. I just wanted to add my welcome.
I agree with DazedandConfused about trying to get a diagnosis as early as possible. Once you know what you're dealing with, you can put the right sort of interventions in place to best help your child.

You have plenty of company here. I sometimes refer to my home as The Hilarious House of Aspie. Everyone other than husband is somewhere on the Autism Spectrum Disorders (ASD) spectrum. The diagnoses of the older ones has helped us to spot the signs very early on with the younger ones. Knowing what to look for and how to accommodate it is very helpful.

Anyway, so sorry that you need us but very glad you found us.

Trinity