newly diagnosed Aspie ds11 is struggling

[ktgrok]

He is at the age where he wants absolutely nothing more than to be "normal". This diagnoses challenges that for him. He is really upset by the idea. He is very high functioning, and does have friends and a pretty good social life. But he does struggle with social skills, and I know he needs to work on those before he gets older and kids start basing relationships on communication more than "doing things."

 

He was also diagnosed as mildly to moderately depressed. I am worried that focusing too much on the Aspergers will make him more depressed, but if we don't than he will have more problems/depression long term. Any tips to help him with this?

[AK_Mom4]

He was also diagnosed as mildly to moderately depressed. I am worried that focusing too much on the Aspergers will make him more depressed, but if we don't than he will have more problems/depression long term. Any tips to help him with this?

 

I would focus on getting the depression under control first. Depression makes everything look overwhelming. I speak from experience when I say that working with a depressed pre-teen is a nightmare - aspie or not. Honestly, everything will look much more manageable for all of you once the depression is controlled.

[ktgrok]

I would focus on getting the depression under control first. Depression makes everything look overwhelming. I speak from experience when I say that working with a depressed pre-teen is a nightmare - aspie or not. Honestly, everything will look much more manageable for all of you once the depression is controlled.

 

Hmmm. Well, the psychologist seemed to think that the depression stems from the frustration of the Aspergers. Particularly the feeling of being different, and the constant frustration of people not understanding him, and he not being able to understand others. So I'm not sure how to address the depression other than addressing the Asperger's. I am taking an extra interest in his diet, and making sure he gets outside to run around, but he already did that most days. Medication wasn't advised at this point for it.

 

Any thoughts?

[RobinF]

Take everything I say with a grain of salt. First, my ds was dx'd very mild. Second, he is younger than your son. We have always shied away from a dx simply b/c we didn't want the dx to become a "crutch" for ds. We don't even talk about it in front of him. The reality is that he has to learn to live in this world and even if it doesn't make sense to him our job is to find a way to help him function in it.

 

So I don't know if taking that "attitude" would help your son or not. Instead of focusing on the dx or how he isn't like others just focus on helping him figure out how to function in the best possible way. Yes, your son is different but the reality is we are all different. We try to reinforce the positive way our ds is different "J you can really remember a lot of the things that happened in that show." "I enjoy hearing you talk about it, but remember that usually people only think it is funny one time." Our son has become very affectionate lately so we gently remind him "only one quick hug" and things like that. Also when he says or does something that is quirky or even not appropriate we are very matter of fact in how we deal with it. (Seriously this happened at church a few weeks ago.) "J why don't you ask her what happened to her leg (amputee) b/c I am pretty sure it didn't just explode."

 

Another thing we do is talk as positively as possible to and about ds. There are so many things that are frustrating when dealing with aspie traits and our ds happens to have a rather negative personality that we try to counter balance that by reminding him of all the positive things about him and that he does.

 

I don't know if this would help or not but could you find an older child to mentor your son? Say someone who is 15-16 yo? We have seen huge leaps the past year and one thing I think that has helped is our son has a friend who is about 2 years older them him and very mature and we see him mimicking her behavior. It is almost like he is learning how to deal with social situations by being around her.

[Verity]

My 12 year old was dx'd last year prior to his birthday. I've known for years that this was Asperger's it all fit but we didn't have anything from a specialist other than his ADD (severe and getting worse).

We started taking Social Skills classes a little more than a year ago from a local agency. They are a non-profit and offer these group classes at a reasonable rate. The classes meet for 8 weeks on and then 2-3 months off, about three sessions a year. My son has gotten a tremendous amount of confidence and skills from his three groups so far. The discuss talking in groups, sharing, playing games, roleplaying, leadership/group skills, creativity, thinking outside of the "norm" - all the parents I have talked with expressed alot of satisfaction with the program (from kids and parents).

 

I would highly suggest this kind of program to another parent of an Aspie.

[RobinF]

My 12 year old was dx'd last year prior to his birthday. I've known for years that this was Asperger's it all fit but we didn't have anything from a specialist other than his ADD (severe and getting worse).

We started taking Social Skills classes a little more than a year ago from a local agency. They are a non-profit and offer these group classes at a reasonable rate. The classes meet for 8 weeks on and then 2-3 months off, about three sessions a year. My son has gotten a tremendous amount of confidence and skills from his three groups so far. The discuss talking in groups, sharing, playing games, roleplaying, leadership/group skills, creativity, thinking outside of the "norm" - all the parents I have talked with expressed alot of satisfaction with the program (from kids and parents).

 

I would highly suggest this kind of program to another parent of an Aspie.

 

I would love to have more info on a program like this, how did you find out about it?

[heart'sjoy]

One frustrated ds here too.

 

We started with RDI here. Only a few months into the program at this point. I'm seeing some signs that were building from the ground floor. And the frustration is getting less as we're building back the thinking skills that are weak.

 

It's a lot like building back the nerve pathways after a mild stroke.

 

But, I'm with you. Depression and suicide are very high risks for teens and adults with high functioning autism. My son sees the extent of the problem and doesn't have the skills to build even the foundation. And this is only the beginning the gulf will widen exponentially.

 

I tried teaching some social skills with Model Me Kids. They did help. But I couldn't get to his thinking, the inflexibility. The more I researched the more I began to see the social skills were only the tip of the iceberg. The much larger problems underneath would affect his employability and ability to live independently.

 

I don't know if RDI will help or not. There are no long term outcome scientific studies that show type of help/ therapy will allow our precious kids to function independently as adults. I was stunned from Dr. Gutstein's research with RDI that less than 2% of high functioning/ asperger's adults are living independently with jobs and their own families.

 

:grouphug: and wisdom to choose what will fit your family.

Melody

[Nature]

That’s a difficult age for him to be diagnosed. The depression doesn’t help at all either.

My son was diagnosed when he was in 1st grade. I’ve always taught him that Asperger’s is a blessing, something positive that he is lucky to have. Although he has some challenges, we all have things that are difficult for us. I haven’t always homeschooled, but after homeschooling him for about a year, he started feeling a lot better about himself.

Would it make a difference if you told him that he’s still the same person, with or without the diagnosis? Doctors and scientists are often looking for patterns and when they discover a consistent pattern, they like to give it a name, like Asperger’s.

Help your son focus on his strengths (memory, intelligence, thinking logically, loyalty, intense focus, reliability, enthusiasm, creativity, expertise in his special interest, honesty, persevearance, loving, a good friend, etc.)

Point out how many famous people had (or have) “Asperger traits.†Scientists, inventors, artists, musicians, business people, authors, actors, politicians, etc. have helped make the world what it is today. Without them, where would we be? As Temple Grandin says: `If the world was left to you socialites, we would still be in caves talking to each other'. There are many sites that provide lengthy lists of these people. Perhaps find someone he admires or respects is on that list.

[Alessandra]

I saw your post on the main forum -- that ds has Asperger's and ADHD, etc. It sounds as though he was diagnosed by a psychologist? I'm posting because I recently heard a talk at a special needs parents group by a psychiatrist who specializes in kids with ADHD.

 

A lot of the parents listening to the talk said that the ADHD symptoms sounded exactly like their Asperger kids. The psychiatrist said that ADHD and Asperger's are not found together. (I think he said "never.") He said that the symptoms are often identical, but that the motivations behind the behaviors are different in ADHD and Asperger's. That talk came to mind when I read your post -- so I was wondering if you were considering getting ds evaluated by another professional, preferably a psychiatrist.

 

I agree about treating the depression if it seems at all serious, and I would not rule out medication. But I would get ds into some kind of "talk" therapy asap. I would not wait for him to adjust to the news, but get him help now.

 

Personally, I prefer psychiatrists over psychologists -- one reason being that, if you are using any kind of medication, you have one professional overseeing everything. Some psychiatrists will work with other therapists, like play therapists, in their offices -- that can help, financially.

[RobinF]

 

That’s a difficult age for him to be diagnosed. The depression doesn’t help at all either.

 

My son was diagnosed when he was in 1st grade. I’ve always taught him that Asperger’s is a blessing, something positive that he is lucky to have. Although he has some challenges, we all have things that are difficult for us. I haven’t always homeschooled, but after homeschooling him for about a year, he started feeling a lot better about himself.

 

Would it make a difference if you told him that he’s still the same person, with or without the diagnosis? Doctors and scientists are often looking for patterns and when they discover a consistent pattern, they like to give it a name, like Asperger’s.

Help your son focus on his strengths (memory, intelligence, thinking logically, loyalty, intense focus, reliability, enthusiasm, creativity, expertise in his special interest, honesty, persevearance, loving, a good friend, etc.)

 

Point out how many famous people had (or have) “Asperger traits.†Scientists, inventors, artists, musicians, business people, authors, actors, politicians, etc. have helped make the world what it is today. Without them, where would we be? As Temple Grandin says: `If the world was left to you socialites, we would still be in caves talking to each other'. There are many sites that provide lengthy lists of these people. Perhaps find someone he admires or respects is on that list.

 

THANK YOU! I love this attitude and how it changes the thinking behind the dx.

[MamaSheep]

....A lot of the parents listening to the talk said that the ADHD symptoms sounded exactly like their Asperger kids. The psychiatrist said that ADHD and Asperger's are not found together. (I think he said "never.") He said that the symptoms are often identical, but that the motivations behind the behaviors are different in ADHD and Asperger's. That talk came to mind when I read your post -- so I was wondering if you were considering getting ds evaluated by another professional, preferably a psychiatrist....

 

This isn't entirely accurate. I have one child clearly in the Asperger's diagnosis and the other clearly in the ADHD camp, and can definitely say that they are different. There are some superficial similarities in some of the observable behaviors, but as you pointed out there are pretty distinct differences in the underlying 'motivations', which stem (as far as anyone can tell) from differences in the physiological and psychological differences between the two, and effective treatment will be different for each.

 

However, Asperger's and ADHD actually have quite a high comorbidity rate (they are OFTEN found together). There is some disagreement amongst scientists as to whether ADHD symptoms in a child with an autism spectrum disorder should be considered just another part of the autism or if they should be viewed as a separate, comorbid disorder; but the two frequently blend into each other, and are often found in different members of the same families as well. In fact, some reasearchers have suggested that ADHD should be considered part of the autism spectrum.

 

If the speaker you refer to said that one is never found with the other, then he is probably in the camp that says all symptoms should be folded into the autism diagnosis, and therefore you should not give the child a separate diagnosis for the ADHD symptoms. And that would be why they would "never" be found together--not because one child cannot have both, but because the diagnostician refuses to recognize them as distinct disorders. The problem I have with this practice is that there is no recognized, proven treatment for autism yet, as such. Not enough is known yet. But if a child has autism AND ADHD or anxiety, or seizures, or whatever, those comorbid conditions often can be treated, which helps eliminate or at least minimize those particular issues that the child is having to deal with. But people who say it's all part of the autism often won't treat the other disorders because to them it's all part of the child's autism, which is not truly treatable. You can do some therapies to make it "better", but it's not going to go away. So if you have a "normal" child who has panic attacks, he will get treatment for an anxiety disorder, but if you have an autistic child with panic attacks, he will not get treatment because his anxiety is considered to be just an aspect of his autism. I think both children's anxiety (or ADHD, or seizures, or whatever) should be taken equally seriously and treated equally, so I'm not a big fan of the "roll it all into one diagnosis" practice. It seems too much like an excuse. It's like saying someone with asthma can never just have an allergy, because the allergic reaction is just part of the asthma.

 

Anyway...my two cents on that.

[MamaSheep]

 

That’s a difficult age for him to be diagnosed. The depression doesn’t help at all either.

 

My son was diagnosed when he was in 1st grade. I’ve always taught him that Asperger’s is a blessing, something positive that he is lucky to have. Although he has some challenges, we all have things that are difficult for us. I haven’t always homeschooled, but after homeschooling him for about a year, he started feeling a lot better about himself.

 

Would it make a difference if you told him that he’s still the same person, with or without the diagnosis? Doctors and scientists are often looking for patterns and when they discover a consistent pattern, they like to give it a name, like Asperger’s.

Help your son focus on his strengths (memory, intelligence, thinking logically, loyalty, intense focus, reliability, enthusiasm, creativity, expertise in his special interest, honesty, persevearance, loving, a good friend, etc.)

 

Point out how many famous people had (or have) “Asperger traits.†Scientists, inventors, artists, musicians, business people, authors, actors, politicians, etc. have helped make the world what it is today. Without them, where would we be? As Temple Grandin says: `If the world was left to you socialites, we would still be in caves talking to each other'. There are many sites that provide lengthy lists of these people. Perhaps find someone he admires or respects is on that list.

 

 

We've done some of this too, and it does help. Different doesn't mean defective, it just means different. We've also pointed out that everyone is different. No two people are exactly the same. Everyone has strengths and everyone has weaknesses, and that's ok. That's how it's supposed to be. Some people have a weakness in acceptance, which exhibits as saying or doing mean things to people they think are different (and they like to try to cover up their own differences because of their fear of being picked on themselves). That's not because there's anything wrong with the people they pick on, it's because of a weakness in the people doing the picking. It's not a particularly "healthy" way to be, even though nobody has invented a "syndrome" for it. You don't have to hang out with them. Some people out there are really good at accepting others, and even good at accepting and celebrating each other's differences. Those are fun people to be around because they are not neurotically trying to stuff themselves into a cookie cutter mold by cutting off bits of their personalities here, and trying to make it look like they've tacked on something over there so they match everyone else (and there are several molds out there, including molds for people who are trying to be "different" in a particular way; "goth", for example, isn't an expression of individuality, as some people view it, it's really just another cookie cutter). They have the freedom to be themselves--which is usually amazing in some ways, and not so fabulous in others (but working on being better, and that's ok). It's the people who are "different" that do things that really matter. I saw a comment somewhere recently (I wish I could remember where) to the effect that it wasn't the cavemen sitting around boasting about who caught the biggest rabbit that made advances, it was the one sitting off to the side banging rocks together who discovered how to master fire. The more I think about it, the more truth I see in that.

 

I don't see Asperger's so much as a blessing (there are some very real challenges that come with it), but nor do I see it as a curse (there are also some amazing abilities that can come with it too). I just see it as a way of being, and as something that is what YOU make of it--just like any other way of being. And that's ok.

[Guest safira218]

 

That’s a difficult age for him to be diagnosed. The depression doesn’t help at all either.

 

My son was diagnosed when he was in 1st grade. I’ve always taught him that Asperger’s is a blessing, something positive that he is lucky to have. Although he has some challenges, we all have things that are difficult for us. I haven’t always homeschooled, but after homeschooling him for about a year, he started feeling a lot better about himself.

 

Would it make a difference if you told him that he’s still the same person, with or without the diagnosis? Doctors and scientists are often looking for patterns and when they discover a consistent pattern, they like to give it a name, like Asperger’s.

Help your son focus on his strengths (memory, intelligence, thinking logically, loyalty, intense focus, reliability, enthusiasm, creativity, expertise in his special interest, honesty, persevearance, loving, a good friend, etc.)

 

Point out how many famous people had (or have) “Asperger traits.†Scientists, inventors, artists, musicians, business people, authors, actors, politicians, etc. have helped make the world what it is today. Without them, where would we be? As Temple Grandin says: `If the world was left to you socialites, we would still be in caves talking to each other'. There are many sites that provide lengthy lists of these people. Perhaps find someone he admires or respects is on that list.

Personally, I prefer psychiatrists over psychologists -- one reason being that, if you are using any kind of medication, you have one professional overseeing everything. Some psychiatrists will work with other therapists, like play therapists, in their offices -- that can help, financially.

[Alessandra]

This isn't entirely accurate. I have one child clearly in the Asperger's diagnosis and the other clearly in the ADHD camp, and can definitely say that they are different. There are some superficial similarities in some of the observable behaviors, but as you pointed out there are pretty distinct differences in the underlying 'motivations', which stem (as far as anyone can tell) from differences in the physiological and psychological differences between the two, and effective treatment will be different for each.

 

I didn't mean to say that Aspies would be confused with ADHD, just that some of the behaviors seemed similar. Sorry about not being quite clear on this.

 

However, Asperger's and ADHD actually have quite a high comorbidity rate (they are OFTEN found together). There is some disagreement amongst scientists as to whether ADHD symptoms in a child with an autism spectrum disorder should be considered just another part of the autism or if they should be viewed as a separate, comorbid disorder; but the two frequently blend into each other, and are often found in different members of the same families as well. In fact, some reasearchers have suggested that ADHD should be considered part of the autism spectrum.

.

 

That is interesting. I know more about AS than about ADHD -- what he said was a surprise to me. I thought I heard the speaker say that they couldn't occur together, but I could have heard wrong or misinterpreted. Perhaps there are several schools of thought? I'll certainly ask about it the next time my group meets, as I am quite curious now. It wouldn't be the first time I've heard quite different arguments, both from reputable doctors.

 

I am aware that some people do want a number of things diagnosed now -- like Asperger's and PDD to be folded into an autism spectrum diagnosis in DSM V. Actually, I've heard passionate arguments on both sides. So the ADHD shouldn't surprise me that much, I suppose -- thank you for bringing it up!

[MamaSheep]

I didn't mean to say that Aspies would be confused with ADHD, just that some of the behaviors seemed similar. Sorry about not being quite clear on this.

 

 

 

That is interesting. I know more about AS than about ADHD -- what he said was a surprise to me. I thought I heard the speaker say that they couldn't occur together, but I could have heard wrong or misinterpreted. Perhaps there are several schools of thought? I'll certainly ask about it the next time my group meets, as I am quite curious now. It wouldn't be the first time I've heard quite different arguments, both from reputable doctors.

 

I am aware that some people do want a number of things diagnosed now -- like Asperger's and PDD to be folded into an autism spectrum diagnosis in DSM V. Actually, I've heard passionate arguments on both sides. So the ADHD shouldn't surprise me that much, I suppose -- thank you for bringing it up!

 

"There are several schools of thought" tends to be a very common thing when it comes to anything related to autism. The "experts" don't know as much as we would all like them to, and they agree upon even less. As a parent it can be a bit disillusioning and frustrating, but that's the way it is. Ask two experts and you'll get three opinions.

[EmilyinND]

I saw your post on the main forum -- that ds has Asperger's and ADHD, etc. It sounds as though he was diagnosed by a psychologist? I'm posting because I recently heard a talk at a special needs parents group by a psychiatrist who specializes in kids with ADHD.

 

A lot of the parents listening to the talk said that the ADHD symptoms sounded exactly like their Asperger kids. The psychiatrist said that ADHD and Asperger's are not found together. (I think he said "never.") He said that the symptoms are often identical, but that the motivations behind the behaviors are different in ADHD and Asperger's. That talk came to mind when I read your post -- so I was wondering if you were considering getting ds evaluated by another professional, preferably a psychiatrist.

 

I agree about treating the depression if it seems at all serious, and I would not rule out medication. But I would get ds into some kind of "talk" therapy asap. I would not wait for him to adjust to the news, but get him help now.

 

Personally, I prefer psychiatrists over psychologists -- one reason being that, if you are using any kind of medication, you have one professional overseeing everything. Some psychiatrists will work with other therapists, like play therapists, in their offices -- that can help, financially.

That's interesting, I've never heard that before. My son was dx'd a few weeks ago @ age 12 by a child psychiatrist who has been named as one of America's best drs. for the last 5 years. My son was dx'd when he was 4 with ADHD & has been medicated since. The medication has done wonders for him, but he still was for lack of a better word "quirky" She was surprised that no one had ever told me he had Aspergers. She told me that ADHD, Anxiety & Aspergers often go together. We are still medicating for the ADHD but will soon be adding biofeedback & neurofeedback treatment for him. I think there are so many unknowns still. It's hard to know what's really true.

 

Emily

[Alessandra]

That's interesting, I've never heard that before. My son was dx'd a few weeks ago @ age 12 by a child psychiatrist who has been named as one of America's best drs. for the last 5 years. My son was dx'd when he was 4 with ADHD & has been medicated since. The medication has done wonders for him, but he still was for lack of a better word "quirky" She was surprised that no one had ever told me he had Aspergers. She told me that ADHD, Anxiety & Aspergers often go together. We are still medicating for the ADHD but will soon be adding biofeedback & neurofeedback treatment for him. I think there are so many unknowns still. It's hard to know what's really true.

 

Emily

 

Emily

My posts were just about one psychiatrist's opinion -- and I don't keep up with all the latest research. Look MamaSheep's posts (which sound like your experience).

 

I am continually amazed by how differently doctors can diagnose the same child! It sounds as though you have found a wonderful doctor. We have someone we like and trust too -- it is a great feeling, isn't it?

[EmilyinND]

Absolutely is a great feeling! Glad you have someone great too!