My daughter is being diagnosed for autism and I need help dealing with this.
April 23, 2012 6:58 AM Subscribe
I've recently discovered that my daughter is, at least in some form, autistic. I'm having a little trouble coping with this revelation and I'm feeling a bit lost about how to go forward.
Pardon me if I vent, and this becomes lengthy, but I need to clear my head about this and see if I can get some advice from other parents or adults that have gone through this.
At this point, my wife and I are dealing with a preliminary evaluation but this is just confirmation of something we have always suspected. We still need a thorough diagnosis by a developmental Psychologist but we are in the process of getting that referral now. Having said that we've had time with the staff at her school and our family doctor, and almost all of the red flags are there: spinning, hand flapping, social anxiety, meltdowns over changes to schedule, picky eating, poorly developed gross motor skills, echolalia...
Having said that, she is a brilliant kid. She's 6, but was reading by age 3, and is now reading at a grade 4 level. Her writing and math skills are miles ahead of the rest of her class and her teacher tells us that she has never had to be 'taught' anything. She attaches emotionally and can understand some social cues. She's fully functional although things like riding a bike and putting on socks take a long time to learn with a lot of repetition. I assume that she will be on the high-functioning/Asperger's side of the spectrum.
The last week, I've been a wreck. I know that she will be fine, things could be a lot worse, and she still has a long happy life ahead, but I am having trouble dealing with a few things.
First, I can't help but feel like somehow my daughter has been taken away from me and 'replaced' by someone different. When I see her and watch her behaviour I don't just see 'her' I see signs of this disorder and I hate feeling this way. I know it's unreasonable and irrational but I just want 'her' back. Ignorance was bliss in this case and I don't know how to move past this. It's killing me that it feels like there is something foreign there now, and it's 'hurting' her.
Second, I don't know how long it will take to go through the full diagnosis/evaluation process and get us to the point where we can develop some coping strategies for her. I want to help her now and not wait. All of the books I've read, however, basically tell you that no two cases of autism are the same and that you have to develop strategies that work for your child. What are some things that my wife and I can do, starting today, to help her?
Finally, I am just so worried about her future. This is natural, I know, but I keep thinking about how school was for me (not good) and I don't want her to spend the next ten to fifteen years dealing with the hell that is other kids. It's a big bleak cloud that's been hanging over me. No one wants anything bad to happen to their kids but I'm already halfway to breaking down whenever I talk about it.
I could really use a little advice and perspective from anyone that has gone through this before. I need to get past this and get on with helping my daughter.
Pardon me if I vent, and this becomes lengthy, but I need to clear my head about this and see if I can get some advice from other parents or adults that have gone through this.
At this point, my wife and I are dealing with a preliminary evaluation but this is just confirmation of something we have always suspected. We still need a thorough diagnosis by a developmental Psychologist but we are in the process of getting that referral now. Having said that we've had time with the staff at her school and our family doctor, and almost all of the red flags are there: spinning, hand flapping, social anxiety, meltdowns over changes to schedule, picky eating, poorly developed gross motor skills, echolalia...
Having said that, she is a brilliant kid. She's 6, but was reading by age 3, and is now reading at a grade 4 level. Her writing and math skills are miles ahead of the rest of her class and her teacher tells us that she has never had to be 'taught' anything. She attaches emotionally and can understand some social cues. She's fully functional although things like riding a bike and putting on socks take a long time to learn with a lot of repetition. I assume that she will be on the high-functioning/Asperger's side of the spectrum.
The last week, I've been a wreck. I know that she will be fine, things could be a lot worse, and she still has a long happy life ahead, but I am having trouble dealing with a few things.
First, I can't help but feel like somehow my daughter has been taken away from me and 'replaced' by someone different. When I see her and watch her behaviour I don't just see 'her' I see signs of this disorder and I hate feeling this way. I know it's unreasonable and irrational but I just want 'her' back. Ignorance was bliss in this case and I don't know how to move past this. It's killing me that it feels like there is something foreign there now, and it's 'hurting' her.
Second, I don't know how long it will take to go through the full diagnosis/evaluation process and get us to the point where we can develop some coping strategies for her. I want to help her now and not wait. All of the books I've read, however, basically tell you that no two cases of autism are the same and that you have to develop strategies that work for your child. What are some things that my wife and I can do, starting today, to help her?
Finally, I am just so worried about her future. This is natural, I know, but I keep thinking about how school was for me (not good) and I don't want her to spend the next ten to fifteen years dealing with the hell that is other kids. It's a big bleak cloud that's been hanging over me. No one wants anything bad to happen to their kids but I'm already halfway to breaking down whenever I talk about it.
I could really use a little advice and perspective from anyone that has gone through this before. I need to get past this and get on with helping my daughter.
Best answer: I'm someone who works with kids on the spectrum and if you'd like to meMail me, I'd be happy to talk to you more about this and possibly point you to some resources local to you. In the meantime a couple of spots you might start:
Autism Speaks has a wonderful resource here in their "First 100 Days" kit. It walks you through the first steps to think about once you have a diagnosis.
For solid information about science and interventions I recommend The Thinking Person's Guide to Autism both in blog and book forms.
There will also be support groups for parents more local to you and they are often the best resources available. They've worked with the schools, the professionals and walked the path with their kids. They are wise and want to help.
Finally, I'd really recommend finding a good social worker who can help with finding resources, but who can also help with the emotional parts of coming to terms with the diagnosis. You are in for some challenges, but you are also in for some wonderful years. This diagnosis does not change who your daughter is, and the things that are wonderful about her will remain so. I can say without hesitation that the folks with autism I work with are hands-down some of the best people I've ever had the opportunity to know. Give yourself space as you start this process. You will make the right decisions, because you clearly love this little girl to pieces. Just like any other parent, you will make mistakes and you'll learn from those mistakes. One day at a time and you guys will get there together.
posted by goggie at 7:13 AM on April 23, 2012 [6 favorites]
Autism Speaks has a wonderful resource here in their "First 100 Days" kit. It walks you through the first steps to think about once you have a diagnosis.
For solid information about science and interventions I recommend The Thinking Person's Guide to Autism both in blog and book forms.
There will also be support groups for parents more local to you and they are often the best resources available. They've worked with the schools, the professionals and walked the path with their kids. They are wise and want to help.
Finally, I'd really recommend finding a good social worker who can help with finding resources, but who can also help with the emotional parts of coming to terms with the diagnosis. You are in for some challenges, but you are also in for some wonderful years. This diagnosis does not change who your daughter is, and the things that are wonderful about her will remain so. I can say without hesitation that the folks with autism I work with are hands-down some of the best people I've ever had the opportunity to know. Give yourself space as you start this process. You will make the right decisions, because you clearly love this little girl to pieces. Just like any other parent, you will make mistakes and you'll learn from those mistakes. One day at a time and you guys will get there together.
posted by goggie at 7:13 AM on April 23, 2012 [6 favorites]
And a couple of other spots:
Susan Senator wrote a wonderful book about raising her autistic son called Making Peace with Autism that talks about exactly this. She also writes a blog that talks about what it's like to live with and love someone with autism, right through adulthood. Lots of really great stuff there.
I also really love Shannon Des Roches Rosa's blog about her family and particularly her son Leo. Everything from what it was like getting diagnosed, trying alternative/complimentary therapies, how to sort through the literature about autism, finding and working with therapists, the ways technology and particularly the iPad works wonders for kids on the spectrum and just slice of life about what is hard and what is great about having a family member with autism.
Wise ladies, both of them.
posted by goggie at 7:20 AM on April 23, 2012 [1 favorite]
Susan Senator wrote a wonderful book about raising her autistic son called Making Peace with Autism that talks about exactly this. She also writes a blog that talks about what it's like to live with and love someone with autism, right through adulthood. Lots of really great stuff there.
I also really love Shannon Des Roches Rosa's blog about her family and particularly her son Leo. Everything from what it was like getting diagnosed, trying alternative/complimentary therapies, how to sort through the literature about autism, finding and working with therapists, the ways technology and particularly the iPad works wonders for kids on the spectrum and just slice of life about what is hard and what is great about having a family member with autism.
Wise ladies, both of them.
posted by goggie at 7:20 AM on April 23, 2012 [1 favorite]
I am not a parent, but I have worked with autistic children on and off during the last decade.
The best advice I can give you, and it stands across the board, for any autistic child, whatever their behaviour or 'spectrum deficiencies' are:
- Find a school for her that can tend to her specific needs. It sounds as though she is in mainstream school and doing well. This is great, but if you can take her to a specialist school once a week or whatever you can manage, you'll find amazing things can happen. With one on one attention and an education and behavioural plan tailored to her needs, she will really shine in ways 'normal' school will never bring out of her. This might be a way to solve your "my daughter has been replaced" feeling. With the right help, your daughter will become a unique autistic individual, and you'll begin to see other kids differently rather than the other way around.
- Secondly, and for me this is crucial: give the school time to work with your daughter, to find her strengths and weaknesses, to tailor to her needs. When they tell you that she has settled well, that her routines are growing, and you begin to see changes in behaviour at home, this is the time you need to go to the school and spend time there as a neutral observer. Again, it is important to do this well into her time there, so she doesn't attach onto you early on. You will be amazed what you see there, and the skills and techniques you will learn will change your relationship with your daughter forever. Listen to the teachers, watch how your daughter responds to their structures and routines, see how she interacts with other children with similar needs. Be a proud parent.
posted by 0bvious at 7:20 AM on April 23, 2012
The best advice I can give you, and it stands across the board, for any autistic child, whatever their behaviour or 'spectrum deficiencies' are:
- Find a school for her that can tend to her specific needs. It sounds as though she is in mainstream school and doing well. This is great, but if you can take her to a specialist school once a week or whatever you can manage, you'll find amazing things can happen. With one on one attention and an education and behavioural plan tailored to her needs, she will really shine in ways 'normal' school will never bring out of her. This might be a way to solve your "my daughter has been replaced" feeling. With the right help, your daughter will become a unique autistic individual, and you'll begin to see other kids differently rather than the other way around.
- Secondly, and for me this is crucial: give the school time to work with your daughter, to find her strengths and weaknesses, to tailor to her needs. When they tell you that she has settled well, that her routines are growing, and you begin to see changes in behaviour at home, this is the time you need to go to the school and spend time there as a neutral observer. Again, it is important to do this well into her time there, so she doesn't attach onto you early on. You will be amazed what you see there, and the skills and techniques you will learn will change your relationship with your daughter forever. Listen to the teachers, watch how your daughter responds to their structures and routines, see how she interacts with other children with similar needs. Be a proud parent.
posted by 0bvious at 7:20 AM on April 23, 2012
hello internet stranger with a personal crisis. a diagnosis of autism isn't a lot more than filling out a big checklist of things your daughter is good at and things she isn't good at. i think it comes with a much greater weight of scientific authority than it warrants: the diagnosis comes with a lot of baggage about what it means to be normal and even more about the big black box of human nature itself. the diagnosis might help smooth her path in school or make some resources available to you but i wouldn't read too much into it about *your* daughter's inner nature. it sounds like she can do lots of things a typical six year old can, some that other six year olds have trouble with and maybe some things she has trouble with. you haven't said why she's gotten onto this track: problems at school, home, concerned grandparent? also, six years old is very young for this sort of thing. for both of my children six years was about the turning point between being "human" and this strange alien-human hybrid being "small child."
more to the point, in a past life I've worked with autistic kids in a school setting and specifically, my eldest son sounds like he fits into the same boat as your daughter: high functioning with meltdowns over schedule changing and weird physical tics (like hand flapping.) He's 12 now and a very very different kid from when he was six. Autism is on shifting sands wrt diagnosis and in the end it comes down to your relationship with your daughter and ultimately what she is capable of doing as a human being. It sounds like she can do a lot and is getting better every day. Feel good about yourself for being a good parent to someone who is a difficult kid and look forward to teasing her about it when she's older.
posted by ennui.bz at 7:37 AM on April 23, 2012 [3 favorites]
more to the point, in a past life I've worked with autistic kids in a school setting and specifically, my eldest son sounds like he fits into the same boat as your daughter: high functioning with meltdowns over schedule changing and weird physical tics (like hand flapping.) He's 12 now and a very very different kid from when he was six. Autism is on shifting sands wrt diagnosis and in the end it comes down to your relationship with your daughter and ultimately what she is capable of doing as a human being. It sounds like she can do a lot and is getting better every day. Feel good about yourself for being a good parent to someone who is a difficult kid and look forward to teasing her about it when she's older.
posted by ennui.bz at 7:37 AM on April 23, 2012 [3 favorites]
Response by poster: Man this is hard...
Thank you for this advice. There is something therapeutic in just typing this out, even to a bunch of internet strangers. I know we have a lot of reading to do and some challenges ahead.
What precipitated this is actually the meltdowns which rarely happen at home but have been accelerating in frequency, especially in school. The trigger seems to have been when her teacher was in a car accident, and was off work for a while. She is back at work part time, and day to day, morning to afternoon, her teacher is changing all the time. They have locked it down to one substitute but the schedule they are working is all over the place.
She came home on Wednesday and said she didn't want to go to school anymore since she 'doesn't fit in there anymore'. That was crushing.
Outside the meltdowns, she's a bit quiet and withdrawn at school but she does have several friends she looks forward to playing with at recess. I'd like to think things will improve once her teacher is back full time which should be happening this month or early next month.
posted by WinnipegDragon at 7:44 AM on April 23, 2012 [1 favorite]
Thank you for this advice. There is something therapeutic in just typing this out, even to a bunch of internet strangers. I know we have a lot of reading to do and some challenges ahead.
What precipitated this is actually the meltdowns which rarely happen at home but have been accelerating in frequency, especially in school. The trigger seems to have been when her teacher was in a car accident, and was off work for a while. She is back at work part time, and day to day, morning to afternoon, her teacher is changing all the time. They have locked it down to one substitute but the schedule they are working is all over the place.
She came home on Wednesday and said she didn't want to go to school anymore since she 'doesn't fit in there anymore'. That was crushing.
Outside the meltdowns, she's a bit quiet and withdrawn at school but she does have several friends she looks forward to playing with at recess. I'd like to think things will improve once her teacher is back full time which should be happening this month or early next month.
posted by WinnipegDragon at 7:44 AM on April 23, 2012 [1 favorite]
...another good reason to look for a specialist school for her. Consistency is important
posted by 0bvious at 7:50 AM on April 23, 2012
posted by 0bvious at 7:50 AM on April 23, 2012
Response by poster: I'm not sure how to go about that. She's in public school now and her teacher has been part of this process. Is that something that the school board decides or are we talking about a private school?
This is in Canada as well, so I don't know how that changes things.
posted by WinnipegDragon at 7:52 AM on April 23, 2012
This is in Canada as well, so I don't know how that changes things.
posted by WinnipegDragon at 7:52 AM on April 23, 2012
We received a spectrum diagnosis for my son a little over a month ago. Neither of us were surprised.
We set about getting the services we can (we're in the US, so a bit different for you, I'm sure) and are pursuing:
ABA
Speech
Occupational Therapy (in our guy, more for fine motor skills than gross)
We also have a good friend who works with kids with autism and she recommended this book, and it has been a huge game changer for us in just the past few weeks.
My husband has really been implementing the strategies in the book, and we've seen some really amazing changes in our son with regards to his speech AND his behaviors. I highly, highly, highly recommend it. We haven't started services yet --- still caught up in scheduling a bunch of things --- but this book has given us a great way to start helping our son on our own, and it's working really well for us. If nothing else, it will almost certainly give you some insights that will help you. The book was written by a mother whose eldest was diagnosed with autism and she later became an ABA, so both perspectives are really prevalent in the book which has been helpful for us.
posted by zizzle at 8:00 AM on April 23, 2012
We set about getting the services we can (we're in the US, so a bit different for you, I'm sure) and are pursuing:
ABA
Speech
Occupational Therapy (in our guy, more for fine motor skills than gross)
We also have a good friend who works with kids with autism and she recommended this book, and it has been a huge game changer for us in just the past few weeks.
My husband has really been implementing the strategies in the book, and we've seen some really amazing changes in our son with regards to his speech AND his behaviors. I highly, highly, highly recommend it. We haven't started services yet --- still caught up in scheduling a bunch of things --- but this book has given us a great way to start helping our son on our own, and it's working really well for us. If nothing else, it will almost certainly give you some insights that will help you. The book was written by a mother whose eldest was diagnosed with autism and she later became an ABA, so both perspectives are really prevalent in the book which has been helpful for us.
posted by zizzle at 8:00 AM on April 23, 2012
I'm afraid I know nothing about the Canadian school system (I am British). Go talk to your school and see what they suggest. If you can't change schools, or none are available, your daughter may be eligible for special attention, like a one on one teaching assistant that works directly with her in each of her classes. This is highly beneficial, since, the assistant will remain stable, even if the teacher, classes etc. change. With an 'official' diagnosis of autism, you have a right to receive these measures.
Don't consider these kind of approaches further evidence that your daughter isn't 'normal'. Equality is not about everyone being treated exactly the same, it is about treating everyone in a way appropriate to their individual needs, and strengths, and thus giving everyone an equal chance. Mainstream school is not built for autistic children. It works well for most kids. Giving your daughter extra support will level the playing field and give her a chance to shine along with her peers.
posted by 0bvious at 8:03 AM on April 23, 2012
Don't consider these kind of approaches further evidence that your daughter isn't 'normal'. Equality is not about everyone being treated exactly the same, it is about treating everyone in a way appropriate to their individual needs, and strengths, and thus giving everyone an equal chance. Mainstream school is not built for autistic children. It works well for most kids. Giving your daughter extra support will level the playing field and give her a chance to shine along with her peers.
posted by 0bvious at 8:03 AM on April 23, 2012
You were presumably neurotypical (you don't say otherwise) and were miserable socially at school, so you know first hand that it's not about a diagnosis. Not fitting is difficult but you got through it and so will your daughter. If you hear her report about not fitting in, add it to her autism diagnosis, and come to the conclusion of "crushing" - so will she. And there's really no need for that.
I'm not a parent but I have also worked with special needs kids, including autistic spectrum. One of the saddest things I saw was sweet wonderful fun kids with aspergers constantly concerned about fitting in, passing, or appearing 'normal.'
A sense that her self is not compromised but enhanced by her particular way of being in the world is the most valuable thing you could possibly give her, and it's only the truth. That's why I think it's so important that you give yourselves the time and space to grow comfortable with raising a kid who is atypical in this particular way and in the mean time to be very careful not to impose your negative responses and interpretations on her.
posted by Salamandrous at 8:07 AM on April 23, 2012
I'm not a parent but I have also worked with special needs kids, including autistic spectrum. One of the saddest things I saw was sweet wonderful fun kids with aspergers constantly concerned about fitting in, passing, or appearing 'normal.'
A sense that her self is not compromised but enhanced by her particular way of being in the world is the most valuable thing you could possibly give her, and it's only the truth. That's why I think it's so important that you give yourselves the time and space to grow comfortable with raising a kid who is atypical in this particular way and in the mean time to be very careful not to impose your negative responses and interpretations on her.
posted by Salamandrous at 8:07 AM on April 23, 2012
Response by poster: I don't care about normal. We taught her from day one that there was no such thing as a 'normal' person and I truly believe that, but I understand what you mean 0bvious.
My concern about the one on one TA is that there will be a stigma with the other kids from that, but I don't know for sure how it will be handled. In some way we are a bit ahead of ourselves I guess.
posted by WinnipegDragon at 8:07 AM on April 23, 2012
My concern about the one on one TA is that there will be a stigma with the other kids from that, but I don't know for sure how it will be handled. In some way we are a bit ahead of ourselves I guess.
posted by WinnipegDragon at 8:07 AM on April 23, 2012
"She came home on Wednesday and said she didn't want to go to school anymore since she 'doesn't fit in there anymore'. That was crushing."
I guess ultimately, yes, you will need to find a school that will support her need for consistency. But also, here is an example of how you need to help her identify exactly what's bothering her. It increases one's sense of control to know what the problem is, even if there's no solution at hand.
Assuming that you asked her what made her think she "wasn't fitting in" and her answer made you think that the problem is that her teacher keeps chopping and changing... well then you can help her to see that. That the problem is that it's in her nature to get very uncomfortable with inconsistency, and the effect of this might be that it's hard to keep calm, which in turn could make it harder to get along with others and work to the best of her ability, or whatever she thinks the effects are. If she goes straight to generalizing "I don't fit in" that's a lot more stressful than isolating the problem.
What I've always done, under conditions of changeability, is find routines to cleave to which are in my control and which don't obtrude on others. I guess routines your daughter could find would be specific to her situation, but say for example, even though the schedule is all over the place, recess is (presumably) at a consistent time for the whole school, so she can at least break the day down and coach herself with the thought that she can get through this until recess.
I also wonder if any of the teachers have speaking voices that needle her and contribute to her agitation. The next time she has a meltdown you might try keeping track of whether it happens with some teachers and not others, or at certain times of day and not others.
Maybe I'm on the wrong track with these examples, but this is the *kind* of analysis that I think will help you.
posted by tel3path at 8:08 AM on April 23, 2012
I guess ultimately, yes, you will need to find a school that will support her need for consistency. But also, here is an example of how you need to help her identify exactly what's bothering her. It increases one's sense of control to know what the problem is, even if there's no solution at hand.
Assuming that you asked her what made her think she "wasn't fitting in" and her answer made you think that the problem is that her teacher keeps chopping and changing... well then you can help her to see that. That the problem is that it's in her nature to get very uncomfortable with inconsistency, and the effect of this might be that it's hard to keep calm, which in turn could make it harder to get along with others and work to the best of her ability, or whatever she thinks the effects are. If she goes straight to generalizing "I don't fit in" that's a lot more stressful than isolating the problem.
What I've always done, under conditions of changeability, is find routines to cleave to which are in my control and which don't obtrude on others. I guess routines your daughter could find would be specific to her situation, but say for example, even though the schedule is all over the place, recess is (presumably) at a consistent time for the whole school, so she can at least break the day down and coach herself with the thought that she can get through this until recess.
I also wonder if any of the teachers have speaking voices that needle her and contribute to her agitation. The next time she has a meltdown you might try keeping track of whether it happens with some teachers and not others, or at certain times of day and not others.
Maybe I'm on the wrong track with these examples, but this is the *kind* of analysis that I think will help you.
posted by tel3path at 8:08 AM on April 23, 2012
Response by poster: That's why I think it's so important that you give yourselves the time and space to grow comfortable with raising a kid who is atypical in this particular way and in the mean time to be very careful not to impose your negative responses and interpretations on her.
We are being incredibly careful about that. All we've told her is that we know sometimes school is hard but that we will help her, and her teacher will as well.
Every day we tell her she is smart, beautiful, wonderful and loved. I will never tell her that she is anything less.
posted by WinnipegDragon at 8:09 AM on April 23, 2012
We are being incredibly careful about that. All we've told her is that we know sometimes school is hard but that we will help her, and her teacher will as well.
Every day we tell her she is smart, beautiful, wonderful and loved. I will never tell her that she is anything less.
posted by WinnipegDragon at 8:09 AM on April 23, 2012
Best answer: My concern about the one on one TA is that there will be a stigma with the other kids from that, but I don't know for sure how it will be handled.
Start from the assumption that everything is going to be fantastic and work from there. The other alternative will always lead you to worry and fret, and your daughter will feel this from you and she in turn will worry and fret.
Fitting in is not about what other people/kids think, it's about how your daughter feels. If you support her and let her know she should be proud to be autistic, proud to have one on one tuition, she will project that to the people around her.
posted by 0bvious at 8:12 AM on April 23, 2012 [3 favorites]
Start from the assumption that everything is going to be fantastic and work from there. The other alternative will always lead you to worry and fret, and your daughter will feel this from you and she in turn will worry and fret.
Fitting in is not about what other people/kids think, it's about how your daughter feels. If you support her and let her know she should be proud to be autistic, proud to have one on one tuition, she will project that to the people around her.
posted by 0bvious at 8:12 AM on April 23, 2012 [3 favorites]
You mention being concerned about the future; a lot of people are giving good advice for dealing with this in the more or less short term, but I imagine you are also thinking much farther out. I don't have any advice per se, but this article about the long and fulfilling life of the very first person to be diagnosed with autism is very optimistic and is worth reading to give a glimpse of a brighter future than may people wold expect.
posted by TedW at 8:18 AM on April 23, 2012
posted by TedW at 8:18 AM on April 23, 2012
Response by poster: Fitting in is not about what other people/kids think, it's about how your daughter feels. If you support her and let her know she should be proud to be autistic, proud to have one on one tuition, she will project that to the people around her.
This helps. Seriously. This helps.
I needed to hear this.
Thank you.
posted by WinnipegDragon at 8:20 AM on April 23, 2012
This helps. Seriously. This helps.
I needed to hear this.
Thank you.
posted by WinnipegDragon at 8:20 AM on April 23, 2012
Start from the assumption that everything is going to be fantastic and work from there. The other alternative will always lead you to worry and fret, and your daughter will feel this from you and she in turn will worry and fret.
OMG. This.
Most of my coolest, most fantastic friends have ASDs, I should mention. I'm fantastic too, I should mention. From the sounds of it, your daughter is also fantastic.
There is no doom nor gloom here.
posted by tel3path at 8:22 AM on April 23, 2012 [2 favorites]
OMG. This.
Most of my coolest, most fantastic friends have ASDs, I should mention. I'm fantastic too, I should mention. From the sounds of it, your daughter is also fantastic.
There is no doom nor gloom here.
posted by tel3path at 8:22 AM on April 23, 2012 [2 favorites]
Finally, I am just so worried about her future.
I know your daughter is only seven and you see her very much as a child because she is one, but she won't always be one. I went to grade school with a brilliant but markedly atypical schoolmate. He's smart and he learned to social stuff he needed to make his life easier when he finally decided it merited his attention. He's now a very popular music professor at Columbia and I very much doubt any of his students would suspect he flapped until he was 12.
posted by DarlingBri at 9:13 AM on April 23, 2012 [1 favorite]
I know your daughter is only seven and you see her very much as a child because she is one, but she won't always be one. I went to grade school with a brilliant but markedly atypical schoolmate. He's smart and he learned to social stuff he needed to make his life easier when he finally decided it merited his attention. He's now a very popular music professor at Columbia and I very much doubt any of his students would suspect he flapped until he was 12.
posted by DarlingBri at 9:13 AM on April 23, 2012 [1 favorite]
Best answer: Your daughter is your daughter is your daughter. No matter what labels people put on her. She is not her disorder. She is still the same smart, wonderful person she was before the diagnosis. Never forget: every child, neurotypical or otherwise, struggles with some skills, and excels at others. Your daughter has gifts to share with the world and those gifts are not diminished by her diagnosis.
My very quirky seven-year-old son is a lot like your daughter -- a brilliant boy (if I say so myself) who read at 2 and can add or subtract three digit numbers in his head as faster than most adults. But he can barely zip a jacket or tie his own shoes, and everyday noises like the whirr of a vacuum cleaner can drive him to distraction. He has had a number of labels tossed at him over the years. Some fit better than others. But my favorite thing to call him is still his name.
I understand your fear for your child's future, and your sadness, too. It's just plain not fair that your daughter has to, and will continue to have to, work so hard for what most would consider to be an ordinary sort of life. Skills that come naturally to others will be hard for her. People will treat her differently, and sometimes cruelly, because she is different.
But you knew those things -- you watched her struggle -- before her diagnosis. The diagnosis doesn't change your daughter. What the diagnosis changes, primarily, is your tool kit for dealing with her struggles. And that's a good thing.
A diagnosis entitles your daughter to get services, in the medical community and at school, that will help her with the things she struggles with. It entitles you to join a tribe of other parents raising children of with similar issues, to gain from their experience, their companionship and their compassion.
This diagnosis may close some doors for your daughter, but it will open others, too. And I have no doubt that with your support she will do great things with her life, and make you proud.
As far as school goes, I suggest you read as much as you can about the educating children who are twice exceptional. Having autism / learning issues presents one set of issues at school; being gifted presents a second (though sometimes remarkably overlapping) set, and I can tell you from personal experience, when you have a child who is both gifted and on the spectrum / learning disabled, finding the right school environment can be a monster headache. I'd be happy to share my war stories with you over MeFi Mail if you're interested.
Above all else remember: you're a good dad, and you can do this. You'd walk through fire for that kid, right? You love her. You can see her through to the future she deserves.
posted by BlueJae at 9:48 AM on April 23, 2012 [2 favorites]
My very quirky seven-year-old son is a lot like your daughter -- a brilliant boy (if I say so myself) who read at 2 and can add or subtract three digit numbers in his head as faster than most adults. But he can barely zip a jacket or tie his own shoes, and everyday noises like the whirr of a vacuum cleaner can drive him to distraction. He has had a number of labels tossed at him over the years. Some fit better than others. But my favorite thing to call him is still his name.
I understand your fear for your child's future, and your sadness, too. It's just plain not fair that your daughter has to, and will continue to have to, work so hard for what most would consider to be an ordinary sort of life. Skills that come naturally to others will be hard for her. People will treat her differently, and sometimes cruelly, because she is different.
But you knew those things -- you watched her struggle -- before her diagnosis. The diagnosis doesn't change your daughter. What the diagnosis changes, primarily, is your tool kit for dealing with her struggles. And that's a good thing.
A diagnosis entitles your daughter to get services, in the medical community and at school, that will help her with the things she struggles with. It entitles you to join a tribe of other parents raising children of with similar issues, to gain from their experience, their companionship and their compassion.
This diagnosis may close some doors for your daughter, but it will open others, too. And I have no doubt that with your support she will do great things with her life, and make you proud.
As far as school goes, I suggest you read as much as you can about the educating children who are twice exceptional. Having autism / learning issues presents one set of issues at school; being gifted presents a second (though sometimes remarkably overlapping) set, and I can tell you from personal experience, when you have a child who is both gifted and on the spectrum / learning disabled, finding the right school environment can be a monster headache. I'd be happy to share my war stories with you over MeFi Mail if you're interested.
Above all else remember: you're a good dad, and you can do this. You'd walk through fire for that kid, right? You love her. You can see her through to the future she deserves.
posted by BlueJae at 9:48 AM on April 23, 2012 [2 favorites]
Response by poster: Yeah, I'd love to hear your story BlueJae. Please MeMail me if you have the time.
posted by WinnipegDragon at 10:03 AM on April 23, 2012
posted by WinnipegDragon at 10:03 AM on April 23, 2012
Best answer: Just to give a bit of an "inside" perspective (I'm diagnosed with ASD myself)...seriously, your daughter sounds quite a bit like me at that age, from the self-taught reading to the echolalia and meltdowns and need for consistency. I grew up to be an electrical engineer and am, generally speaking, one of the happiest people I know. This does not mean I have no difficulties (e.g., I can't drive a car, often need reminders about eating and other self-care stuff, have trouble keeping up with and processing real-time verbal conversations, etc.) but my life is far from being OMGDOOM.
Of course given I was born in 1978 there was much, much less known about autism (especially the less "obvious" types, and especially in females) when I was growing up, and I often got saddled with labels like "emotionally disturbed" or "attention seeking" or just plain "strange" by peers and teachers alike. The net effect of this was to make it so when I finally DID get an accurate diagnosis, my primary reaction (and that of my parents) was one of relief and "oh, so THAT explains it!"
IMO, the only real function of diagnosis is as a tool. It's not a summation of my (or your kid's) personality or character...all it is is a description of traits that tend to cluster together in some people. People are still individuals when they/we have these trait-clusters and knowing about how our brains work simply provides information useful in helping us (and those around us) structure things to maximize the awesomeness of our lives. E.g., even just learning that there was something called "sensory overload" commonly experienced by autistic people helped me *tremendously* in terms of reducing meltdowns, because I was able to start recognizing triggers and taking steps to minimize them and their impact.
Also, specifically regarding school...I cannot overstate the value of getting proper accommodations for your kid wherever they may be necessary, and being her advocate to make sure that (a) she actually gets them, and (b) she is reassured that needing different types of instruction/testing is absolutely nothing to be ashamed of. I would never have gotten through college without the Disability Resource Center, as they were able to get me set up with things like quieter rooms for test-taking and extended time. Yet there were times when I had terrible difficulty getting my professors to sign the forms because many of them would shame me for needing accommodations as if I "didn't really belong in their class". Basically what I'm saying here is that plenty of good resources exist to help students with atypical learning styles but you may need to do some extra legwork yourself up front to make sure your kid can consistently access them.
posted by aecorwin at 10:08 AM on April 23, 2012 [1 favorite]
Of course given I was born in 1978 there was much, much less known about autism (especially the less "obvious" types, and especially in females) when I was growing up, and I often got saddled with labels like "emotionally disturbed" or "attention seeking" or just plain "strange" by peers and teachers alike. The net effect of this was to make it so when I finally DID get an accurate diagnosis, my primary reaction (and that of my parents) was one of relief and "oh, so THAT explains it!"
IMO, the only real function of diagnosis is as a tool. It's not a summation of my (or your kid's) personality or character...all it is is a description of traits that tend to cluster together in some people. People are still individuals when they/we have these trait-clusters and knowing about how our brains work simply provides information useful in helping us (and those around us) structure things to maximize the awesomeness of our lives. E.g., even just learning that there was something called "sensory overload" commonly experienced by autistic people helped me *tremendously* in terms of reducing meltdowns, because I was able to start recognizing triggers and taking steps to minimize them and their impact.
Also, specifically regarding school...I cannot overstate the value of getting proper accommodations for your kid wherever they may be necessary, and being her advocate to make sure that (a) she actually gets them, and (b) she is reassured that needing different types of instruction/testing is absolutely nothing to be ashamed of. I would never have gotten through college without the Disability Resource Center, as they were able to get me set up with things like quieter rooms for test-taking and extended time. Yet there were times when I had terrible difficulty getting my professors to sign the forms because many of them would shame me for needing accommodations as if I "didn't really belong in their class". Basically what I'm saying here is that plenty of good resources exist to help students with atypical learning styles but you may need to do some extra legwork yourself up front to make sure your kid can consistently access them.
posted by aecorwin at 10:08 AM on April 23, 2012 [1 favorite]
Best answer: Regarding special school services -- (in the U.S.) often the best school services, especially in a smaller city, is at a public school. They get the disability funding and have a large enough population of special-needs students to have, say, a deafness specialist and an autism specialist and so on. I'm in a metro area of 300,000, and many parents of special needs students put them in private school, then pull them back to public district, because even though the private schools get the disability funding from the government, they typically don't have a critical mass of special needs students to have lots of specialists; they usually have a generalist or a part-timer. The public district has two deaf classrooms, three autism classrooms (for children who are much more severely autistic than your daughter), etc. Specialized schools for children with a particular special need are more typical of very large cities where there's a critical mass to support it. Winnipeg is kind-of an in-between size, so I'm not sure which model it would fit. But I would start where you are, educate yourself about Canadian students' rights when they have special needs and the services available, and work with your school (and school system) to get her what services she needs. If it's not working, then you think about the next step.
Mainstreaming is so common in U.S. and Canadian schools these days that kids actually are a lot more used to other students with special needs, and "bullying" of those kids isn't as prevalent as it used to be. There may be half a dozen kids in her class who already have "pull-outs" (going out of the room for a special class, or to work with a speech therapist, or whatever) and two with a "one-on-one" (personal aide), and the kids really just don't pay a whole lot of attention to it, especially in elementary school. It's part of their landscape. In junior high it sometimes becomes a bigger issue, depending on the school dynamics, but by then you will have lots of coping strategies. (High school is often easier again because kids are a little less "YOU MUST FIT IN" and there are more niches.)
In my state, about 22% of students have at least one special-needs diagnosis (ranging from dyslexia to severe disability), and when one in five kids in the class has some kind of special accommodation, the kids really just don't register it as strange. It's just part of How The World Works to them.
posted by Eyebrows McGee at 10:28 AM on April 23, 2012
Mainstreaming is so common in U.S. and Canadian schools these days that kids actually are a lot more used to other students with special needs, and "bullying" of those kids isn't as prevalent as it used to be. There may be half a dozen kids in her class who already have "pull-outs" (going out of the room for a special class, or to work with a speech therapist, or whatever) and two with a "one-on-one" (personal aide), and the kids really just don't pay a whole lot of attention to it, especially in elementary school. It's part of their landscape. In junior high it sometimes becomes a bigger issue, depending on the school dynamics, but by then you will have lots of coping strategies. (High school is often easier again because kids are a little less "YOU MUST FIT IN" and there are more niches.)
In my state, about 22% of students have at least one special-needs diagnosis (ranging from dyslexia to severe disability), and when one in five kids in the class has some kind of special accommodation, the kids really just don't register it as strange. It's just part of How The World Works to them.
posted by Eyebrows McGee at 10:28 AM on April 23, 2012
One thing I didn't see mentioned on a quick skim: Asperger Syndrome tends to manifest differently in girls than it does in boys, and most resources/research seems to focus on the more typical male Asperger traits. You should try to find information about Asperger syndrome in girls.
(Also, many people don't seem to differentiate, but I consider Asperger Syndrome to be separate from Autism, yes, it is an autism spectrum disorder, but someone with Asperger's is not autistic. People with Asperger's tend to have average to high IQs, while autism is defined in part by a low IQ.)
posted by catatethebird at 12:01 PM on April 23, 2012 [1 favorite]
(Also, many people don't seem to differentiate, but I consider Asperger Syndrome to be separate from Autism, yes, it is an autism spectrum disorder, but someone with Asperger's is not autistic. People with Asperger's tend to have average to high IQs, while autism is defined in part by a low IQ.)
posted by catatethebird at 12:01 PM on April 23, 2012 [1 favorite]
I do not have a child that is autistic BUT my wife has a cousin that is. This will make you feel better. He just graduated from his 2 year degree. He is autistic (aspergers) and also has some food alergies. HE graduated from a 2 year criminal justice degree.
So unless your daughter is severe the diagnosis should not be worried about too much. As long as your willing to work with your daughter she should be fine
posted by majortom1981 at 12:29 PM on April 23, 2012
So unless your daughter is severe the diagnosis should not be worried about too much. As long as your willing to work with your daughter she should be fine
posted by majortom1981 at 12:29 PM on April 23, 2012
Sorry if this has already been mentioned, but it's also okay to take a moment to mourn the loss of your mental image of your kid, even if at the very same time you celebrate all of her wonderful differences. Your life probably will be different than it would have been if she didn't have the diagnosis, and it seems like allowing yourself to be sad about the things that will be harder could allow you to enjoy all the ways it will be better even more.
posted by lab.beetle at 3:04 PM on April 23, 2012
posted by lab.beetle at 3:04 PM on April 23, 2012
Way down the road future...I'm a university prof and have had a couple of ASD students come through in the past couple of years. What made things work for both of them were supportive families, a strong set of strategies for dealing with their triggers, work with the accommodation office at the school to get profs up to speed on what reasonable accommodations would help each of them, and a willingness to communicate with me about what they needed. One young woman asked to talk to the class for a couple minutes during the first week of school so her classmates would know about her tics and not be freaked out by them. She was all like, "This is how it is, yo." and everyone in the class was like, "Hey, that's cool." And that was it. In group work, she'd tell her team to just tell her directly when she was talking about one thing too much because she just couldn't tell herself how to judge that kind of thing. Her being proactive was very important to her success in my class. She's a junior now and still doing just fine. You sound like you'll be super supportive, which will likely matter most in the long run.
posted by BlooPen at 3:33 PM on April 23, 2012 [1 favorite]
posted by BlooPen at 3:33 PM on April 23, 2012 [1 favorite]
It's okay -- hell, it's probably normal and healthy -- to mourn the diagnosis.
posted by The corpse in the library at 4:55 PM on April 23, 2012
posted by The corpse in the library at 4:55 PM on April 23, 2012
Response by poster: There is a lot to read and absorb here.
Thanks.
posted by WinnipegDragon at 7:37 PM on April 23, 2012
Thanks.
posted by WinnipegDragon at 7:37 PM on April 23, 2012
Response by poster: I just wanted to add that in addition to the help and answers I've received in this thread, I've had about a dozen eMails and meMails from some amazing and helpful MeFites that have offered their perspective on having autism, or of loving someone who has it.
Every one of these has been incredibly helpful to me, I read and reread them last night and again this morning. The fact that people are willing to share their stories with a total stranger on the internet is a bit humbling. As one meMailer put it, "Spectrum parents are a tribe, and we stick together. "
I know this is going to be hard and it's going to be a lot of work, but my kids, my wife and I will get through this together.
Thanks everyone.
posted by WinnipegDragon at 7:18 AM on April 24, 2012 [3 favorites]
Every one of these has been incredibly helpful to me, I read and reread them last night and again this morning. The fact that people are willing to share their stories with a total stranger on the internet is a bit humbling. As one meMailer put it, "Spectrum parents are a tribe, and we stick together. "
I know this is going to be hard and it's going to be a lot of work, but my kids, my wife and I will get through this together.
Thanks everyone.
posted by WinnipegDragon at 7:18 AM on April 24, 2012 [3 favorites]
Response by poster: Old thread, I know, but I just wanted to say that my daughter was diagnosed with Asperger's this week. The developmental psychiatrist at the provincial program said that our school was already doing a great job and that we have already implemented almost all of the changes that they normally recommend to parents, so we are in good shape going forward.
This diagnosis will unlock program and funding support for the school, she will be getting some OT sessions, and we are going to attend some social programs for ASD kids and their parents this fall.
Things are going well.
posted by WinnipegDragon at 8:19 AM on August 3, 2012 [4 favorites]
This diagnosis will unlock program and funding support for the school, she will be getting some OT sessions, and we are going to attend some social programs for ASD kids and their parents this fall.
Things are going well.
posted by WinnipegDragon at 8:19 AM on August 3, 2012 [4 favorites]
Also appreciate any tips, and any suggestions, help, what has worked what has not, resources, books, what have you done or would do differently?
My daughter is borderline, or low on the spectrum, or even possibly Aspergers at some level. She is a happy little girl, has some outbursts once in a while, loves Ballet and anything related to it, and is a healthy and loving girl.
Some "filters" are a bit different, I think her senses are there, but slightly different from a typical behavior kid of her age.
She does have some struggles, interaction with other kids, playing with other kids, and not really enjoying school (even though they are going above and beyond on everything they can, even before being diagnosed today). She also struggles with sleeping, really hard to relax, so we started trying low levels of natural melathonine (spelling), what has been working wonders for her, she gained more energy and is adhering to a better sleeping schedule.
My wife has also been a bit more emotional, and of course took the news with weight, but she is hanging in there and we are up for trying everything in our power to help our little one.
Most of all we love her and want her to be very happy :)
posted by Boarlove at 2:59 PM on November 8, 2012
My daughter is borderline, or low on the spectrum, or even possibly Aspergers at some level. She is a happy little girl, has some outbursts once in a while, loves Ballet and anything related to it, and is a healthy and loving girl.
Some "filters" are a bit different, I think her senses are there, but slightly different from a typical behavior kid of her age.
She does have some struggles, interaction with other kids, playing with other kids, and not really enjoying school (even though they are going above and beyond on everything they can, even before being diagnosed today). She also struggles with sleeping, really hard to relax, so we started trying low levels of natural melathonine (spelling), what has been working wonders for her, she gained more energy and is adhering to a better sleeping schedule.
My wife has also been a bit more emotional, and of course took the news with weight, but she is hanging in there and we are up for trying everything in our power to help our little one.
Most of all we love her and want her to be very happy :)
posted by Boarlove at 2:59 PM on November 8, 2012
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You say above that this is "something you've always suspected" and the "red flags are there"--so your daughter hasn't been replaced. She was always there--and so was this. The only difference is that now you know about it, with a definite answer. The difference is in you, not in her.
This may sound simplistic but I swear that taking this perspective made a surprising amount of difference for me in accepting a rather significant revelation about a loved one.
posted by dlugoczaj at 7:05 AM on April 23, 2012 [11 favorites]