How do I help my daughter be as successful as possible?
February 8, 2011 9:05 AM Subscribe
Yesterday my daughter was diagnosed with Asperger's. I know a little, my husband knows next to nothing. Can you help? (Yeah, this is going to be pretty long.)
Our ten year old daughter has been having some serious behavior issues in school. We took her to the pediatrician who diagnosed her as having ADD, ODD, Depression, and Anxiety with some OCD leanings. Since she had such an across the board kind of diagnosis the pediatrician told me that I really needed to follow up with a psychiatrist. The pediatrician was thinking that my daughter may be Bi-Polar (my brother was diagnosed Bi-Polar as a teen) and was afraid that any meds for the ADD or anxiety could be detrimental.
Yesterday my husband and I took our daughter to a psychiatrist. Initially we spoke to a counselor. He spoke to all of us for about an hour and then told us he was really thinking that my daughter has Asperger's, definitely not Bi-Polar. He then left and talked to the Psychiatrist for a few minutes. They both came back and the doctor agreed with the counselor that my daughter has Asperger's and that's what we need to treat.
The doctor told us that Asperger's has different components: a tendency to ADD-like behavior, a tendency to OCD-like behavior, social problems, and lots of anxiety.
We came away with a prescription for anxiety meds and a few more appointments in a couple weeks. We were told to work on getting our daughter to make and keep eye contact while she's talking to somebody.
From what I understand people with Asperger's tend to have a different outlook on life (to various degrees) than people without the syndrome. Almost as if the social cues we learn are a completely foreign language to them. My husband has heard of Asperger's, and I've explained what I understand to him.
Where do we go from here? What books do we need to check out from the library? Are there internet resources we need to look into? What do I tell my daughter's school? What do they need to to do help her be successful? What do I need to do to help her be successful?
The doctor told us we need to create as many social opportunities as possible. Things like sports, karate, or dance classes where there are set steps to follow are encouraged. Are there things that are more helpful than others? My daughter would rather take ballet than (let's say) soccer, but we don't have a lot of money so we need to be selective. If soccer is better then that's where we want to go. Is it more a matter of putting her where she has an interest, or where she'll get the most interaction? We live in a good sized city, I can find lessons for just about anything. The problem is that art classes (which she would LOVE) won't have as many kids as the local basketball league (which she wouldn't like much.)
Any input from parents of kids with Asperger's or Mefites who have Asperger's is most appreciated.
Additional info: We're in Northern Utah. My daughter is a fourth grader. She also has Celiac Disease, so she's already on a gluten-free diet. I have two other kids: 8 and 3 years old, both boys. I am a stay-at-home-mom.
Our ten year old daughter has been having some serious behavior issues in school. We took her to the pediatrician who diagnosed her as having ADD, ODD, Depression, and Anxiety with some OCD leanings. Since she had such an across the board kind of diagnosis the pediatrician told me that I really needed to follow up with a psychiatrist. The pediatrician was thinking that my daughter may be Bi-Polar (my brother was diagnosed Bi-Polar as a teen) and was afraid that any meds for the ADD or anxiety could be detrimental.
Yesterday my husband and I took our daughter to a psychiatrist. Initially we spoke to a counselor. He spoke to all of us for about an hour and then told us he was really thinking that my daughter has Asperger's, definitely not Bi-Polar. He then left and talked to the Psychiatrist for a few minutes. They both came back and the doctor agreed with the counselor that my daughter has Asperger's and that's what we need to treat.
The doctor told us that Asperger's has different components: a tendency to ADD-like behavior, a tendency to OCD-like behavior, social problems, and lots of anxiety.
We came away with a prescription for anxiety meds and a few more appointments in a couple weeks. We were told to work on getting our daughter to make and keep eye contact while she's talking to somebody.
From what I understand people with Asperger's tend to have a different outlook on life (to various degrees) than people without the syndrome. Almost as if the social cues we learn are a completely foreign language to them. My husband has heard of Asperger's, and I've explained what I understand to him.
Where do we go from here? What books do we need to check out from the library? Are there internet resources we need to look into? What do I tell my daughter's school? What do they need to to do help her be successful? What do I need to do to help her be successful?
The doctor told us we need to create as many social opportunities as possible. Things like sports, karate, or dance classes where there are set steps to follow are encouraged. Are there things that are more helpful than others? My daughter would rather take ballet than (let's say) soccer, but we don't have a lot of money so we need to be selective. If soccer is better then that's where we want to go. Is it more a matter of putting her where she has an interest, or where she'll get the most interaction? We live in a good sized city, I can find lessons for just about anything. The problem is that art classes (which she would LOVE) won't have as many kids as the local basketball league (which she wouldn't like much.)
Any input from parents of kids with Asperger's or Mefites who have Asperger's is most appreciated.
Additional info: We're in Northern Utah. My daughter is a fourth grader. She also has Celiac Disease, so she's already on a gluten-free diet. I have two other kids: 8 and 3 years old, both boys. I am a stay-at-home-mom.
I'm slightly concerned that they came back with a diagnosis after an hour and a bit of just talking to the three of you. Did they talk to her alone? Did they run any additional psychological/psychiatric tests? Is there a children's hospital you can go to for a more in-depth assessment? I say this coming from the perspective of a parent who has a child with sensory processing disorder and ADHD. His school initially recommended testing because they thought he had Aspergers. After a battery of tests (auditory, psychiatric, intelligence), we came away with SPD and ADHD. I also have two very good friends who have children diagnosed with Aspergers, again after running through a battery of tests.
And just to get you reading something, I highly recommend Quirky Kids, and Quirky Yes, Hopeless No.
Again, I really recommend you either get a second opinion or find out why these particular professionals diagnosed your daughter after only an hour of speaking to you. I suggested a children's hospital because they'll have the resources to help you after the diagnosis, which it seems you didn't get with your current doctor.
posted by cooker girl at 9:21 AM on February 8, 2011 [6 favorites]
And just to get you reading something, I highly recommend Quirky Kids, and Quirky Yes, Hopeless No.
Again, I really recommend you either get a second opinion or find out why these particular professionals diagnosed your daughter after only an hour of speaking to you. I suggested a children's hospital because they'll have the resources to help you after the diagnosis, which it seems you didn't get with your current doctor.
posted by cooker girl at 9:21 AM on February 8, 2011 [6 favorites]
For school-related help, guidance with the IEP, etc., I'd suggest getting in touch with your local Parent Training and Information Center, which in your case is the Utah Parent Center. They'll be able to help with special education or Section 504-related issues and kind of guide you through the process with the school.
posted by infinitywaltz at 9:25 AM on February 8, 2011
posted by infinitywaltz at 9:25 AM on February 8, 2011
Some general tips:
Asperger's occupies one of the many spots on the autism spectrum. Luckily (as "lucky" as you can be when faced with a diagnosis that implies that her life may have challenges), it's pretty common and there are a lot of resources out there. Many of these resources may be autism-based, so if you're able to find some good resources through those types of groups without getting sucked into the shrill Jenny McCarthyist vaccine debates, that's probably a good start.
Given the many different diagnoses that your daughter has faced, though, and the many ways in which Asperger's (like ADD, which I and many other MeFites have) can present, you should probably focus on her behavior and the ways she interacts with the world around her instead of a diagnosis. Yes, it can be very helpful to find resources based on a new diagnosis, but first and foremost she is a person. Any issues she may have may result more from coping mechanisms or the ways in which her peers relate to her than because of the ways in which her brain works.
Asperger's is in no way a doom and gloom scenario. Sure, you and she will have tough times, tougher than it might be with other kids... but it sounds like you've gone through some tough times already. People with Asperger's often live fulfilling lives that allow them to make great contributions. It won't be without heartache, but what life is?
She may even be able to turn the things that make her different into valuable attributes: becoming an authority on something specific, working on something complex, seeing something differently in a way that allows her to solve a problem that others cannot.
I've got a friend with a wonderful daughter a little older than yours who has some of the same issues. MeMail me if you'd like to get in contact; they're fantastic, friendly people.
posted by Madamina at 9:30 AM on February 8, 2011 [2 favorites]
Asperger's occupies one of the many spots on the autism spectrum. Luckily (as "lucky" as you can be when faced with a diagnosis that implies that her life may have challenges), it's pretty common and there are a lot of resources out there. Many of these resources may be autism-based, so if you're able to find some good resources through those types of groups without getting sucked into the shrill Jenny McCarthyist vaccine debates, that's probably a good start.
Given the many different diagnoses that your daughter has faced, though, and the many ways in which Asperger's (like ADD, which I and many other MeFites have) can present, you should probably focus on her behavior and the ways she interacts with the world around her instead of a diagnosis. Yes, it can be very helpful to find resources based on a new diagnosis, but first and foremost she is a person. Any issues she may have may result more from coping mechanisms or the ways in which her peers relate to her than because of the ways in which her brain works.
Asperger's is in no way a doom and gloom scenario. Sure, you and she will have tough times, tougher than it might be with other kids... but it sounds like you've gone through some tough times already. People with Asperger's often live fulfilling lives that allow them to make great contributions. It won't be without heartache, but what life is?
She may even be able to turn the things that make her different into valuable attributes: becoming an authority on something specific, working on something complex, seeing something differently in a way that allows her to solve a problem that others cannot.
I've got a friend with a wonderful daughter a little older than yours who has some of the same issues. MeMail me if you'd like to get in contact; they're fantastic, friendly people.
posted by Madamina at 9:30 AM on February 8, 2011 [2 favorites]
OH! One more thing: are your daughter's behavior problems only happening in school? If there are issues across the board (school, home, extra-curricular activities, church, friend's homes, etc.), then by all means, get an assessment. If, however, this is only something the school is seeing, I'd start telling the doctors that information and I'd work with the school to find out why it's only happening at school (is she bored, is she under-challenged/over-challenged, is she being bullied, etc.).
posted by cooker girl at 9:31 AM on February 8, 2011 [1 favorite]
posted by cooker girl at 9:31 AM on February 8, 2011 [1 favorite]
I'm mom to an 8-year-old Aspie. First, take a deep breath. It's not as bad as you think! Your child is still the same child you know and love - the diagnosis just gives you a road map to help her with the challenges she's facing.
Agreed you should try to find a psychologist or therapist who is experienced with Asperger's - they can help you with a lot of your questions.
For extracurricular activities, be guided by her interests rather than a stereotypical idea of what's good for socializing. You've probably noticed she has a strong, focused interest in something or other - see if you can build an activity around that. I would have had to drag my son kicking and screaming to any kind of a sports activity, but he has a special interest in music and so we have him enrolled in the local School of Rock.
Books I've found useful:
The Complete Guide to Asperger's Syndrome by Tony Attwood - a comprehensive resource.
Freaks, Geeks and Asperger Syndrome by Luke Jackson - inside info a teenager with Asperger's.
The Best Kind of Different by Shonda Schilling - a parent's-eye view of going through the diagnostic process.
Your child is very likely entitled to special education services as well as positive behavior support. Again, an experienced professional near you will be informed on the ins and outs of how it works in your state, and be able to let you know how to get the ball rolling with your school. Your most important online resource in this regard is www.wrightslaw.com. This site has information about the rights your child has under the Individuals with Disabilities Education Act.
posted by Daily Alice at 9:35 AM on February 8, 2011 [1 favorite]
Agreed you should try to find a psychologist or therapist who is experienced with Asperger's - they can help you with a lot of your questions.
For extracurricular activities, be guided by her interests rather than a stereotypical idea of what's good for socializing. You've probably noticed she has a strong, focused interest in something or other - see if you can build an activity around that. I would have had to drag my son kicking and screaming to any kind of a sports activity, but he has a special interest in music and so we have him enrolled in the local School of Rock.
Books I've found useful:
The Complete Guide to Asperger's Syndrome by Tony Attwood - a comprehensive resource.
Freaks, Geeks and Asperger Syndrome by Luke Jackson - inside info a teenager with Asperger's.
The Best Kind of Different by Shonda Schilling - a parent's-eye view of going through the diagnostic process.
Your child is very likely entitled to special education services as well as positive behavior support. Again, an experienced professional near you will be informed on the ins and outs of how it works in your state, and be able to let you know how to get the ball rolling with your school. Your most important online resource in this regard is www.wrightslaw.com. This site has information about the rights your child has under the Individuals with Disabilities Education Act.
posted by Daily Alice at 9:35 AM on February 8, 2011 [1 favorite]
Also agreeing with those who are surprised you got an Asperger's diagnosis after just an hour. My son had testing that took place over several weeks before we got a diagnosis. Testing and evaluation should be available for free through your local public school.
posted by Daily Alice at 9:39 AM on February 8, 2011 [2 favorites]
posted by Daily Alice at 9:39 AM on February 8, 2011 [2 favorites]
Here's the viewpoint of an Aspie [a friendly term for one with Aspeger's] (oblig. "Not all Aspies are the same, your daughter is not me, I can't say anything beyond my own experience, etc"):
Team things can be really stressful. I played soccer and baseball, very very briefly. The problem with being on a team, is that if you feel out of place and the rest of the team bonds, you'll just feel more and more out of place. Especially if you're not very good at sports, which I'm not. That said, I enjoyed summer soccer camps as a kid- lots of other kids, but without the worry of having a team.
I'd suggest going for something she's already interested in- if she can get excited about it in spite of the stressful social aspects, she'll probably feel somewhat less anxious about it. Art is easier, because you can often do things on your own and connect with other people when you want to. My very favorite thing my parents pushed me to do was wheel-thrown pottery. The "class" I took was basically 10 kids, unlimited clay, a few hours, and being able to just sit and concentrate on symmetry. Bliss, really! But I also got really comfortable chatting with other people in the class, it was great. I'd still sometimes get anxious before going to the class, but once I was there I was fine.
I think it's going to be quality over quantity. If I was put in a situation in which I felt too uncomfortable, I would just withdraw and not interact. Awful. On the other hand, often I would kick up a fight about going somewhere I really did want to go, but was feeling anxious about. Anxiety can be awful and as a kid it manifested as huge wobbly tantrums. Push her to do things she doesn't want to do; it's the only way I was able to learn how to tolerate new things.
I'd also recommend you read up on Asperger's; there are a lot of good books out there. I know that's what my parents did when I was diagnosed. Does your daughter know her diagnosis? If she doesn't, she might appreciate knowing. Sometimes having a label is good; it's better than "weird," anyway.
posted by BungaDunga at 9:43 AM on February 8, 2011 [2 favorites]
Team things can be really stressful. I played soccer and baseball, very very briefly. The problem with being on a team, is that if you feel out of place and the rest of the team bonds, you'll just feel more and more out of place. Especially if you're not very good at sports, which I'm not. That said, I enjoyed summer soccer camps as a kid- lots of other kids, but without the worry of having a team.
I'd suggest going for something she's already interested in- if she can get excited about it in spite of the stressful social aspects, she'll probably feel somewhat less anxious about it. Art is easier, because you can often do things on your own and connect with other people when you want to. My very favorite thing my parents pushed me to do was wheel-thrown pottery. The "class" I took was basically 10 kids, unlimited clay, a few hours, and being able to just sit and concentrate on symmetry. Bliss, really! But I also got really comfortable chatting with other people in the class, it was great. I'd still sometimes get anxious before going to the class, but once I was there I was fine.
I think it's going to be quality over quantity. If I was put in a situation in which I felt too uncomfortable, I would just withdraw and not interact. Awful. On the other hand, often I would kick up a fight about going somewhere I really did want to go, but was feeling anxious about. Anxiety can be awful and as a kid it manifested as huge wobbly tantrums. Push her to do things she doesn't want to do; it's the only way I was able to learn how to tolerate new things.
I'd also recommend you read up on Asperger's; there are a lot of good books out there. I know that's what my parents did when I was diagnosed. Does your daughter know her diagnosis? If she doesn't, she might appreciate knowing. Sometimes having a label is good; it's better than "weird," anyway.
posted by BungaDunga at 9:43 AM on February 8, 2011 [2 favorites]
I don't have any specific recommendations, but I want to emphasize what Daily Alice said: "Your child is still the same child you know and love - the diagnosis just gives you a road map to help her with the challenges she's facing." Of course your daughter is unique and nobody fits perfectly in any diagnostic box, but this diagnosis will be hugely helpful in figuring out how to best help her.
My 17-year-old cousin has Aspergers (I think also a diagnosis of ADHD which is common with Aspergers) and I just wanted to give you the anecdote of how *awesome* she is doing. She was a wild and difficult child, and I don't think we ever imagined that she would be such an amazing teenager. I am so so so proud of her! She has a serious boyfriend and is planning on attending college. She and her parents have worked very hard and the work has really paid off. I know they did a lot of behavioral therapy, in particular helping her make eye contact, etc.
One thing that really helped my cousin was therapeutic horsebackriding. There have been a lot of studies showing that working with horses is beneficial to kids with a variety of (mental and physical disabilities). She has actually become a very accomplished horsewoman, and now rides at a "regular" stable, as well as volunteers at her old stable.
Good luck! Let us know how it goes.
posted by radioamy at 9:47 AM on February 8, 2011
My 17-year-old cousin has Aspergers (I think also a diagnosis of ADHD which is common with Aspergers) and I just wanted to give you the anecdote of how *awesome* she is doing. She was a wild and difficult child, and I don't think we ever imagined that she would be such an amazing teenager. I am so so so proud of her! She has a serious boyfriend and is planning on attending college. She and her parents have worked very hard and the work has really paid off. I know they did a lot of behavioral therapy, in particular helping her make eye contact, etc.
One thing that really helped my cousin was therapeutic horsebackriding. There have been a lot of studies showing that working with horses is beneficial to kids with a variety of (mental and physical disabilities). She has actually become a very accomplished horsewoman, and now rides at a "regular" stable, as well as volunteers at her old stable.
Good luck! Let us know how it goes.
posted by radioamy at 9:47 AM on February 8, 2011
Your daughter needs specialized diagnosis and assessment-- even if it is Asperger's, the additional testing that specialists in autism-spectrum disorders can provide will give you a clearer picture of what can be done to help her succeed.
(I'd also consider asking any professionals you see with relevant experience to recommend a new GP; developmental challenges don't appear to be this one's strong suit, and you're going to need a GP who can advocate for you and who understands your daughter's situation. Oppositional defiant disorder is a pretty serious thing to be labeling a kid with if it is entirely unclear that that is, in fact, what's going on.)
posted by fairytale of los angeles at 9:50 AM on February 8, 2011 [2 favorites]
(I'd also consider asking any professionals you see with relevant experience to recommend a new GP; developmental challenges don't appear to be this one's strong suit, and you're going to need a GP who can advocate for you and who understands your daughter's situation. Oppositional defiant disorder is a pretty serious thing to be labeling a kid with if it is entirely unclear that that is, in fact, what's going on.)
posted by fairytale of los angeles at 9:50 AM on February 8, 2011 [2 favorites]
Response by poster: Just to clarify: My husband and I are not completely convinced that she does have Asperger's Syndrome. We want more information. The "find a second opinion" camp is right along what we've been thinking. I thought the few hours we spent at the doctor's seemed like too little time as well. They did speak to her individually but my husband and I were still in the room. I'm really liking the idea of contacting the children's hospital for more information.
As for the diagnosis itself, I'm actually not at all upset. Going in expecting to hear Bi-Polar, hearing Asperger's instead is a relief. I've known and heard about lots of successful people with Asperger's. I kind of feel that it's like maybe all this time she's been speaking French and I didn't know it. Now that I know what language she's speaking I can learn how to interpret for her and help teach her how to interpret for herself.
posted by TooFewShoes at 10:01 AM on February 8, 2011 [1 favorite]
As for the diagnosis itself, I'm actually not at all upset. Going in expecting to hear Bi-Polar, hearing Asperger's instead is a relief. I've known and heard about lots of successful people with Asperger's. I kind of feel that it's like maybe all this time she's been speaking French and I didn't know it. Now that I know what language she's speaking I can learn how to interpret for her and help teach her how to interpret for herself.
posted by TooFewShoes at 10:01 AM on February 8, 2011 [1 favorite]
Another resource is Utah State University's Department of Special Education and Rehabilitation. In the right-hand column labeled Grants & Projects, there are a variety of links and resources that might be helpful. If you call their main office, they might be able to put you in touch with someone who can give you more resources in your area.
posted by puritycontrol at 10:03 AM on February 8, 2011
posted by puritycontrol at 10:03 AM on February 8, 2011
Response by poster: fairytale of los angeles: That's why our pediatrician wanted us to go to a psychiatrist. She didn't want to label my daughter with all those things if it was really some other thing that was causing her to test a certain way. The ADD, ODD, anxiety and depression were never 'formal' diagnosis. The doctor said that since the tests were showing so many things it was probably a sign of something else.
posted by TooFewShoes at 10:05 AM on February 8, 2011
posted by TooFewShoes at 10:05 AM on February 8, 2011
nthing get a proper diagnosis. You need to talk with someone who has spent a good amount of time working to diagnose your child in order to better understand what you can do to help her.
I have little understanding to give you on who to talk to or what to read. I have however worked with a hand full of kids who have Asperger's kids. Here is what I can say, they are some of the most delightful kids I could ask for. Do they have major problems that need to be addressed and worked with...yes.
I have had some Asperger's kids that really were the sweet most loving and fun (in their own way) kids on this planet. You have to see past the anti social behavior and find the personality within the kids.
I would speak to a special education teacher within her school and ask for a recommendation for a good outside evaluation program. They are expensive and worth it.
posted by Felex at 10:06 AM on February 8, 2011
I have little understanding to give you on who to talk to or what to read. I have however worked with a hand full of kids who have Asperger's kids. Here is what I can say, they are some of the most delightful kids I could ask for. Do they have major problems that need to be addressed and worked with...yes.
I have had some Asperger's kids that really were the sweet most loving and fun (in their own way) kids on this planet. You have to see past the anti social behavior and find the personality within the kids.
I would speak to a special education teacher within her school and ask for a recommendation for a good outside evaluation program. They are expensive and worth it.
posted by Felex at 10:06 AM on February 8, 2011
For more "leisurely" education, I highly recommend the HBO film about Temple Grandin. It talks about what Temple, her mother, and her teacher did to lead to a full and successful life for a pretty severe case of Asperger's. I haven't read Dr. Grandin's books, but I've seen her lecture twice and she's great.
posted by bread-eater at 10:12 AM on February 8, 2011
posted by bread-eater at 10:12 AM on February 8, 2011
Second or Third opinion. And even then, you might want to incorporate helpful techniques suggested but avoid labeling your daughter. By this, I mean that you might want help your daughter develop certain skills but keep her from any idea that she has "X" syndrome or "Y" condition.
She's young. She may grow out of some of the behaviors that originally sent you to the doctor. The doctors she has seen may be wrong. Incorrectly labeling your daughter now may impact her forever. (I saw something like this happen to my younger brother. Sucked.)
posted by jbenben at 10:24 AM on February 8, 2011
She's young. She may grow out of some of the behaviors that originally sent you to the doctor. The doctors she has seen may be wrong. Incorrectly labeling your daughter now may impact her forever. (I saw something like this happen to my younger brother. Sucked.)
posted by jbenben at 10:24 AM on February 8, 2011
To echo rtha: occupational therapy can be greatly helpful, specifically Floortime / DIR.
posted by The corpse in the library at 10:28 AM on February 8, 2011
posted by The corpse in the library at 10:28 AM on February 8, 2011
I worked for a couple of years at a summer camp program (part of a larger camp) for kids with special needs, many of whom had Aspergers.
Some of the best things that I think the kids got out of the camp were:
- social skills training and practice. They had formal small group for this, which I think really helped teach, reinforce, and build confidence, but also just the interactions with each-other, counselors, and other campers.
- semi-structured supportive interactions with a broad spectrum of people - both other kids who faced similar challenges and kids in the larger camp setting who had been taught, prepared, expected to, and were excited to interact with them both in more formal 'buddy' programs and informal integrated sports and theater programs. Some activities were mixed, some were our camp section only.
- a chance to experience independence in a way that special needs kids are less likely to have, in terms of being away from their parents and families. (Most kids stayed for 8 weeks). Along with that, they had a chance to learn and practice being in a new environment with new patterns (often a challenge for kids with Aspergers) in a comfortable supportive and structured setting (we had great staff, generally 2-5 years older than the rest of the camp counselors).
Generally the kids really thrived. The ones who seemed most successful were the ones (whatever their particular issues) who were aware of and comfortable with themselves. One of my sad memories is this really great kid (maybe 14-15) who would continually nervously ask us if we could tell or we thought that other people could tell, in whatever given situation, that he had Aspergers. It was clear he'd come to the understanding that it was a thing to hide as much as possible, to 'blend in'. A contrast to that was a kid who would happily tell anyone in conversation that she had PDD because she hadn't had enough oxygen when she was born. Just who she was and nothing more problematic about it than if she had blue eyes because both of her parents did.
So, yes, labeling can suck, but I don't think it has to any more than any other label - unless it's a label that a kid learns is somehow shameful or problematic. For the kids who had an internalized positive sense of themselves including their 'diagnoses', it was also something that helped them understand themselves and their relation to others, and a point of uniqueness and even pride.
My sense is that you should look for not more than a couple of different activities for her where she's set up to succeed and enjoy. Something she's interested in, with staff who understand and create a good social environment for her (modeling good behavior for the typical kids, interacting with her appropriately for her needs, etc), and with more structure rather than less. Ballet could be really great, because it's a mix of individual and group, and you could find a relatively small class where the teacher(s) feel comfortable and have experience interacting with kids with special needs. It can also lead into larger groups, if she ends up working on a big recital or something, and can also be something she pursues relatively independently. It's also something that generally girls get positive social credit for, so that's good too. Of course, any number of things could be really good, but you know this is an interest for her.
Also, camp can be great!
posted by Salamandrous at 10:49 AM on February 8, 2011
Some of the best things that I think the kids got out of the camp were:
- social skills training and practice. They had formal small group for this, which I think really helped teach, reinforce, and build confidence, but also just the interactions with each-other, counselors, and other campers.
- semi-structured supportive interactions with a broad spectrum of people - both other kids who faced similar challenges and kids in the larger camp setting who had been taught, prepared, expected to, and were excited to interact with them both in more formal 'buddy' programs and informal integrated sports and theater programs. Some activities were mixed, some were our camp section only.
- a chance to experience independence in a way that special needs kids are less likely to have, in terms of being away from their parents and families. (Most kids stayed for 8 weeks). Along with that, they had a chance to learn and practice being in a new environment with new patterns (often a challenge for kids with Aspergers) in a comfortable supportive and structured setting (we had great staff, generally 2-5 years older than the rest of the camp counselors).
Generally the kids really thrived. The ones who seemed most successful were the ones (whatever their particular issues) who were aware of and comfortable with themselves. One of my sad memories is this really great kid (maybe 14-15) who would continually nervously ask us if we could tell or we thought that other people could tell, in whatever given situation, that he had Aspergers. It was clear he'd come to the understanding that it was a thing to hide as much as possible, to 'blend in'. A contrast to that was a kid who would happily tell anyone in conversation that she had PDD because she hadn't had enough oxygen when she was born. Just who she was and nothing more problematic about it than if she had blue eyes because both of her parents did.
So, yes, labeling can suck, but I don't think it has to any more than any other label - unless it's a label that a kid learns is somehow shameful or problematic. For the kids who had an internalized positive sense of themselves including their 'diagnoses', it was also something that helped them understand themselves and their relation to others, and a point of uniqueness and even pride.
My sense is that you should look for not more than a couple of different activities for her where she's set up to succeed and enjoy. Something she's interested in, with staff who understand and create a good social environment for her (modeling good behavior for the typical kids, interacting with her appropriately for her needs, etc), and with more structure rather than less. Ballet could be really great, because it's a mix of individual and group, and you could find a relatively small class where the teacher(s) feel comfortable and have experience interacting with kids with special needs. It can also lead into larger groups, if she ends up working on a big recital or something, and can also be something she pursues relatively independently. It's also something that generally girls get positive social credit for, so that's good too. Of course, any number of things could be really good, but you know this is an interest for her.
Also, camp can be great!
posted by Salamandrous at 10:49 AM on February 8, 2011
Yes to getting another opinion and focused therapies. A family-member works at the Asperberger's Association of New England, and I know that a lot of their initial calls come from parents that recently got a diagnosis and are trying to figure out what to do. Maybe there's a similar association near you, or if you called AANE they could refer you to a national group.
posted by ldthomps at 10:57 AM on February 8, 2011
posted by ldthomps at 10:57 AM on February 8, 2011
Obligatory: I am just one Aspie, my diagnosis came much later in my life than your daughter's, and I like being the way I am (to the point that when I had to be treated for depression, I presented my prescribing psychiatrist with a list of my actual symptoms, plus a list of so-called 'symptoms' that I specifically wanted to avoid 'fixing').
I basically manage all my social interactions by an elaborate lookup table, except with people I'm very close to. I'm high-functioning enough that it mostly isn't necessary to disclose my diagnosis, but I have found it helpful to have a few people I trust who don't mind if I sometimes take a second to verbally dissect their reactions to things so I can check whether the contents of my lookup table are providing the right interpretation and response. I don't know if your daughter is old enough to make sense of that, but that's been one of the most valuable things in my social adaptation. As I get older, the lookup table gets more elaborate and things get a little easier.
The doctor told us we need to create as many social opportunities as possible. Things like sports, karate, or dance classes where there are set steps to follow are encouraged.
I am horrifically bad at team sports and anything that depends on any sort of group bonding. I did great with Tae Kwon Do as a kid; fencing to a lesser extent (I just wasn't very good at it, but I managed the solo/small-squad structure better than large-team). Right now I do aikido, which is structured enough to be great for me and has the side benefit of providing me with structured, specific, predictable physical contact, which has helped me be less uncomfortable with the unavoidable physical contact of daily life.
We were told to work on getting our daughter to make and keep eye contact while she's talking to somebody.
Again, just my personal viewpoint (heh), but this makes me climb the walls. People's faces are creepy. I'll make eye contact if I have to (when it would be professionally awkward not to, for instance), but it still makes my skin crawl, even after lots of practice. I'm not anybody's doctor, and if your daughter's doctor thinks it's good to work on this, I'm not in a position to contradict, but I just want to throw out there that the vast majority of the time people are pretty much ok with me looking at something else while we're talking (papers, something in my hands, the middle distance behind their right ear) and it has not been worth it for me to force myself to look at people, social convention be damned.
posted by dorque at 11:03 AM on February 8, 2011 [2 favorites]
I basically manage all my social interactions by an elaborate lookup table, except with people I'm very close to. I'm high-functioning enough that it mostly isn't necessary to disclose my diagnosis, but I have found it helpful to have a few people I trust who don't mind if I sometimes take a second to verbally dissect their reactions to things so I can check whether the contents of my lookup table are providing the right interpretation and response. I don't know if your daughter is old enough to make sense of that, but that's been one of the most valuable things in my social adaptation. As I get older, the lookup table gets more elaborate and things get a little easier.
The doctor told us we need to create as many social opportunities as possible. Things like sports, karate, or dance classes where there are set steps to follow are encouraged.
I am horrifically bad at team sports and anything that depends on any sort of group bonding. I did great with Tae Kwon Do as a kid; fencing to a lesser extent (I just wasn't very good at it, but I managed the solo/small-squad structure better than large-team). Right now I do aikido, which is structured enough to be great for me and has the side benefit of providing me with structured, specific, predictable physical contact, which has helped me be less uncomfortable with the unavoidable physical contact of daily life.
We were told to work on getting our daughter to make and keep eye contact while she's talking to somebody.
Again, just my personal viewpoint (heh), but this makes me climb the walls. People's faces are creepy. I'll make eye contact if I have to (when it would be professionally awkward not to, for instance), but it still makes my skin crawl, even after lots of practice. I'm not anybody's doctor, and if your daughter's doctor thinks it's good to work on this, I'm not in a position to contradict, but I just want to throw out there that the vast majority of the time people are pretty much ok with me looking at something else while we're talking (papers, something in my hands, the middle distance behind their right ear) and it has not been worth it for me to force myself to look at people, social convention be damned.
posted by dorque at 11:03 AM on February 8, 2011 [2 favorites]
I'd second (or third or fourth) getting a second opinion.This is going to be from a UK perspective, so there will be procedural differences but I know the diagnostic tools are fairly international.
If a child has difficulties in school that are more pronounced than home it would be usual to get a report from their school - class teacher, any support staff that are particularly involved. That gives the doctor a good baseline to work from: the kid is like this at home (from talking to the parents), like this at school (from the report).
If they're going down the route of an ASD diagnosis the 'gold standard' is some sort of structured interview plus a structured series of tasks for the child to do. Even if a child was blatantly, completely and absolutely autistic then it would be good practice still to at least do the structured tasks - that gives an idea of where there strengths and weaknesses are, and hence what to work on. The interview can take well over an hour, the structured tasks can take up to two hours (depends very much on the child). Where there is doubt about the diagnosis there may be further assessments by people like speech and language therapists to get a fuller picture. An hour is not enough.
A good diagnosis isn't shoving a kid into a box labelled 'Aspergers' (or whatever), it's about getting a picture of what their difficulties are - and importantly, what their strengths are so you can use those when you're helping them. So your daughter's love of art is a great strength, and you'd look into the best ways of channeling that to deal with the highlighted difficulties. I don't think you've got a good diagnosis yet.
There's loads of good general advice from upthread. I'm sure you'll be fine.
posted by Coobeastie at 11:42 AM on February 8, 2011 [2 favorites]
If a child has difficulties in school that are more pronounced than home it would be usual to get a report from their school - class teacher, any support staff that are particularly involved. That gives the doctor a good baseline to work from: the kid is like this at home (from talking to the parents), like this at school (from the report).
If they're going down the route of an ASD diagnosis the 'gold standard' is some sort of structured interview plus a structured series of tasks for the child to do. Even if a child was blatantly, completely and absolutely autistic then it would be good practice still to at least do the structured tasks - that gives an idea of where there strengths and weaknesses are, and hence what to work on. The interview can take well over an hour, the structured tasks can take up to two hours (depends very much on the child). Where there is doubt about the diagnosis there may be further assessments by people like speech and language therapists to get a fuller picture. An hour is not enough.
A good diagnosis isn't shoving a kid into a box labelled 'Aspergers' (or whatever), it's about getting a picture of what their difficulties are - and importantly, what their strengths are so you can use those when you're helping them. So your daughter's love of art is a great strength, and you'd look into the best ways of channeling that to deal with the highlighted difficulties. I don't think you've got a good diagnosis yet.
There's loads of good general advice from upthread. I'm sure you'll be fine.
posted by Coobeastie at 11:42 AM on February 8, 2011 [2 favorites]
I work with a pediatric geneticist at a hospital, and my general recommendation would be to see a developmental pediatrician. These specialists are going to be more apt at giving your daughter the correct diagnosis over a psychologist/psychiatrist.
posted by kuanes at 12:43 PM on February 8, 2011 [2 favorites]
posted by kuanes at 12:43 PM on February 8, 2011 [2 favorites]
I think you want to see a developmental pediatrician and a child psychologist/psychiatrist who specializes in neurosensory issues. A lot of psychiatrists who don't specialize in those issues lump all neurosensory variations into "Asperger's Syndrome," which may not be an accurate diagnosis for your daughter.
One of my beloved quasi-goddaughters has a set of neurosensory issues that include difficulties in controlling her behavior, panic in crowds, overwhelming sensitivity to minor physical or sensory irritations (fingernails on a blackboard or an itchy tag on her t-shirt send her into an out-of-control tantrum, for instance), and some challenges with fine motor skills. On the other hand, she taught herself to read when she was 4 and she is incredibly creative and highly memorious and a total sweetheart when she's not flipping out.
So her mom chose to homeschool her, which seems to be working out OK, and she goes to a very strict ballet school for classes three times a week, where she does wonderfully. For whatever reason, she is able to focus in that environment where she couldn't in a classroom--perhaps the structure and the music?
The thing is that Asperger's Syndrome is a very popular diagnosis right now, and I suspect that it's overdiagnosed. It's also far more common in boys, and in general, the medical system uses male patients as the standard and shuttles female patients into categories defined for male patients even when the female patients' symptoms don't exactly match. I don't know your daughter, but I wonder if she doesn't have a set of neurosensory issues more common to girls (ones similar to the child I described above, which a couple of other girls of my acquaintance have experienced, and which I myself experienced at a milder level in my own childhood)? My husband and I have for years called this "the girl Asperger's" for want of anything better, but I think that clinicians who are really focused on the neurosensory development of children are starting to understand this complex of issues a lot better, and it probably has a real name.
The sensitivity to touch and light and crowds seem to me to be bellwether symptoms of this. Even now, at 46, I cut all the tags out of my garments because they can make me feel like I'm sitting in a traffic jam with a weasel chewing on my leg.
posted by Sidhedevil at 3:57 PM on February 8, 2011
One of my beloved quasi-goddaughters has a set of neurosensory issues that include difficulties in controlling her behavior, panic in crowds, overwhelming sensitivity to minor physical or sensory irritations (fingernails on a blackboard or an itchy tag on her t-shirt send her into an out-of-control tantrum, for instance), and some challenges with fine motor skills. On the other hand, she taught herself to read when she was 4 and she is incredibly creative and highly memorious and a total sweetheart when she's not flipping out.
So her mom chose to homeschool her, which seems to be working out OK, and she goes to a very strict ballet school for classes three times a week, where she does wonderfully. For whatever reason, she is able to focus in that environment where she couldn't in a classroom--perhaps the structure and the music?
The thing is that Asperger's Syndrome is a very popular diagnosis right now, and I suspect that it's overdiagnosed. It's also far more common in boys, and in general, the medical system uses male patients as the standard and shuttles female patients into categories defined for male patients even when the female patients' symptoms don't exactly match. I don't know your daughter, but I wonder if she doesn't have a set of neurosensory issues more common to girls (ones similar to the child I described above, which a couple of other girls of my acquaintance have experienced, and which I myself experienced at a milder level in my own childhood)? My husband and I have for years called this "the girl Asperger's" for want of anything better, but I think that clinicians who are really focused on the neurosensory development of children are starting to understand this complex of issues a lot better, and it probably has a real name.
The sensitivity to touch and light and crowds seem to me to be bellwether symptoms of this. Even now, at 46, I cut all the tags out of my garments because they can make me feel like I'm sitting in a traffic jam with a weasel chewing on my leg.
posted by Sidhedevil at 3:57 PM on February 8, 2011
If you're close to SLC --
HOPE A Parent to Parent Network
2290 E. 4500 S. Suite 110
Salt Lake City, UT 84117
801-272-0493 801-272-1051
800-468-1160 UT only
That is the local asperger's support group. I suspect the parents there might have some great local knowledge to share. Wishing you and your daughter all the best.
posted by Nickel Pickle at 8:51 PM on February 8, 2011
HOPE A Parent to Parent Network
2290 E. 4500 S. Suite 110
Salt Lake City, UT 84117
801-272-0493 801-272-1051
800-468-1160 UT only
That is the local asperger's support group. I suspect the parents there might have some great local knowledge to share. Wishing you and your daughter all the best.
posted by Nickel Pickle at 8:51 PM on February 8, 2011
This thread is closed to new comments.
I am not any sort of expert, but given that you know so little about the disorder and its treatments, have the doctors hooked you up with a behavioral and/or occupational therapist? Working with someone who already knows what they're doing and has experience working with kids with Asperger's can only shortcut the process, and help you and your husband avoid reinventing the wheel. If they haven't hooked you up, I think you need to push them to do so.
posted by rtha at 9:15 AM on February 8, 2011 [4 favorites]