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O/T: HEALTH My 11 year old was diagnosed with autism yesterday

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levijean

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My 5th grader has been having difficulties at school over the past few months and after countless visits with psychologists, counselors, school staff, etc she was finally diagnosed with autism by a child psychiatrist. I'm surprised it took as long as it did but now with the label some odd behaviors she has exhibited since birth make sense. She is high-functioning & intelligent, but cant deal with certain things out of order or surprises in her schedule. She has difficulty with peers because she thinks they should act in a particular way and she has no flexibility when she thinks something should be done in a particular way and she has little empathy. She cant handle the sensory chaos of the classroom, lunch room, recess, etc. Switching tasks is difficult. I know some people here are or have family who are high-functioning on the spectrum such as Aspergers or similar. Any advice on how my wife & I can best help her deal with her situation?
 

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broswoodwork

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My 5th grader has been having difficulties at school over the past few months and after countless visits with psychologists, counselors, school staff, etc she was finally diagnosed with autism by a child psychiatrist. I'm surprised it took as long as it did but now with the label some odd behaviors she has exhibited since birth make sense. She is high-functioning & intelligent, but cant deal with certain things out of order or surprises in her schedule. She has difficulty with peers because she thinks they should act in a particular way and she has no flexibility when she thinks something should be done in a particular way and she has little empathy. She cant handle the sensory chaos of the classroom, lunch room, recess, etc. Switching tasks is difficult. I know some people here are or have family who are high-functioning on the spectrum such as Aspergers or similar. Any advice on how my wife & I can best help her deal with her situation?
Heyo,

My son was diagnosed in pre-school, so we had a chance to step way out in front with iep's, sub- separate class rooms, and all of that stuff pretty early on.

The laws are so different from state to state, but here in MA we've gotten a lot of traction using an education advocate.

You're probably going to want to start getting involved with developmental pediatricians, behavioralist, and neuro-psych specialist sooner rather than later. There are a shit ton of local facebook groups for parents with kids on the spectrum that can be a wealth of information and recommendations.
 

Bekit

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My 5th grader has been having difficulties at school over the past few months and after countless visits with psychologists, counselors, school staff, etc she was finally diagnosed with autism by a child psychiatrist. I'm surprised it took as long as it did but now with the label some odd behaviors she has exhibited since birth make sense. She is high-functioning & intelligent, but cant deal with certain things out of order or surprises in her schedule. She has difficulty with peers because she thinks they should act in a particular way and she has no flexibility when she thinks something should be done in a particular way and she has little empathy. She cant handle the sensory chaos of the classroom, lunch room, recess, etc. Switching tasks is difficult. I know some people here are or have family who are high-functioning on the spectrum such as Aspergers or similar. Any advice on how my wife & I can best help her deal with her situation?
Sorry to hear about the challenges you're walking through.

One thing you might find interesting and encouraging is the story of Temple Grandin, who had autism. There's a film about her life, as well as YouTube videos by her.


Regarding how you and your wife can best help her, one thing that might be helpful is a brain scan. That'll give you more insight into where her strengths might lie (visual? language? pattern thinking?) and how you can steer her into a productive direction where she can excel.
 

broswoodwork

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one thing that might be helpful is a brain scan.
Again, laws are all over the place, from state to state, but the school system, at least here in MA, has to pay for a substantial number of the tests required for placement and assessing any accommodations that may be required to meet state education requirements.

Just to reiterate, because a group of entrepreneurs are likely going to present a very creative array of next steps, there's a bit of a tried and true process here:
Talk to your daughter's doctor first and get some referrals to specialists. Consider an advocate before agreeing to anything the school presents at the first iep meeting, and connect with local parent groups.
 

Kruiser

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Any advice on how my wife & I can best help her deal with her situation?
Check out Brain Balance and the work of Dr. Robert Melilo. He has had great success with some kids with autism. He is a very controversial figure. He thinks he's figured out a way to truly help kids with autism (and related disorders). Reviews of his work and Brain Balance centers are a combination of 1 star and 5 star reviews. Lots of MDs think it is pseudoscience BS, but a lot of families say he's helped their kids make tremendous strides. A Brain Balance center will charge like 6k for a 3 month program or 12k for a 6 month program. But you can kind of DIY by doing the exercises in his Disconnected Kids book which you can get for like $10. I've been doing the exercises with my son who has oppositional defiant disorder, and it seems to be making a positive difference.
 

broswoodwork

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Afterthought:
Don't forget to take care of yourself, and take care of you and your wife's relationship.

Keep those communication channels opebn and healthy.

I forget this one myself sometimes, but don't forget: you're not a/b testing a landing page here. There's no magic bullet.

Remember to hug! :)
 

Jon L

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I don't have an autistic kid, but, from what I've seen with people in your shoes, and from struggles in my own life, you're going to have a ton of people try to offer you advice. Be really picky and careful about what you let in and how you go about learning about your daughter. Find people that encourage you and her.

Also, take care of yourself and your spouse. You and your spouse have probably already had struggles over how to parent your daughter. Figure out how to come together and support each other. Get counseling for that.

Its ok to take time for yourself. Its ok to grieve the fact that you don't have a normal daughter, even though that makes you feel like a horrible person. Its ok to feel whatever you feel about it. I'm sure you have other negative feelings around this, all of which are completely normal. Accept them and find people to support you in it. You will have joys in life that people with normal kids don't know anything about, too.

One step at a time. Find a supportive community.
 

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My daughter was diagnosed with adhd almost 2 years ago.

The biggest difference between pre-diagnosis and post-diagnosis is that now it's a lot easier to advocate for her. She's still the same kid with the same struggles, but now we have access to supports and services that we wouldn't otherwise have.

My biggest piece of advice I guess would be to research. I'm a trained special ed teacher and that helps a ton when it comes to meeting with school staff and medical staff. I keep saying that it must be why I entered the field.
 

Primeperiwinkle

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I have several dear friends who have children who are autistic or diagnosed with Asperger’s. The crazy thing is that the “spectrum” according to the doctors (who we are taught to trust) is so large it’s difficult to narrow down what will work well for your child. Because the system of education is so utterly broken and perverse- if a kid doesn’t fit in a box administrators and teachers don’t know what to do. Then they try to find other boxes. They’re essentially trying out theories and using our children as guinea pigs, hoping for something to work. But what if all kids come with unique challenges? And what if they’re not as wonky as we’ve been taught to believe? What if public education is so limited it just flat out doesn’t have the capabilities for the care your kid needs?

My friends and I found a different way to approach education. It’s not a methodology. It’s based on principles that have been proven over and over not techniques that are the newest fad.

EVERY kid gains. EVERY kid grows. I literally have not met one single human being who preferred the broken system over this better one.

Let me tell you about it.

There’s a very specific educational philosophy that my friends discovered and it works with ALL of their children, the “labeled” ones and those who are “normal”. I have a friend whose daughter is a math prodigy and her daughter responds brilliantly to this type of education. My friend whose adult daughter is severely autistic ALSO responds in ways that are stunning to behold. What do I mean when I say “responds”?

These kids are ALL engaged in their studies, flourishing, relaxed and prospering. The children with autism have an environment that reassures them and gives them an ability to make connections while valuing who they are for their abilities, not diminishing who they are based on a diagnosis. The super smart kids are challenged. The “normal” ones routinely comment about how much they love school. But it’s not a school. It’s quite literally a different way of looking at life, literature, history, nature, drawing, math, and science. In fact, it’s so different many ppl don’t investigate it thoroughly before rejecting it. It seems so incredibly..simple. But the ones who do, from every religion and around the world, are seeing awe-inspiring results in the lives of their children.. and in themselves.

My quotation marks are not meant to dismiss the unique struggles you will face as a parent; obviously you should be informed as to what challenges may be in your future with an autistic child. I just want to make sure that you recognize that these labels are the newest way our society tries desperately to push kids into a box.

Your kid isn’t going to ever fit in a box.

Yes, she will have similarities with certain other special needs kids.. but she’s unique. She’s not a label. How can you approach her education in a way that respects who she is and provides room for her to grow?

I highly recommend reading For The Children’s Sake by Susan Schaeffer Macaulay. It is precisely the type of mind blowing experience that you got from MJ’s book... only, it’s about education. Then you’ll go down a rabbit hole and ultimately? If you choose to implement this particular philosophy in your family’s life.. I can almost guarantee that you will be surrounded by ppl who support you a hundred thousand times better than any public or private school ever will. And you will be providing a life for your kid that you never imagined.

Your kid is wonderful. You just gotta provide an environment, habits, and ideas that will respect her as an individual. Good luck and godspeed and may you not spend two years doubting it.. because the faster you implement it the faster you’re going to see some awesome stuff happening in your daughters life. And yes, it’s incredibly simple. Just as precisely simple as CENTS is to grasp.. and just as hugely life-rearranging as CENTS is to aim for.
 

Jesse Harris

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My 8 year old daughter in 2nd grade just received an autism "label" a few months ago, but we had an IEP with the school under early learning delay label since kindergarten, which she repeated once. Having a label only helps you acquire support from the community. We never discuss her label with her, I doubt she even knows or care she has one. She knows she is a little different from her peers but to be honest I think she looks down on them for being different from her.

I cannot give specific advice to your situation but I can give some general advice. Get a good private speech therapist. They can help with social skills. We spend very little time on what I thought speech was about(sounds and stuff), and instead work on how to communicate well with others. They have group therapy and other format which can equip her what lots of tools and skill to get what she wants out of her social life at school. They can find funding if money is an issue for you. Your insurance will pay for some sessions, just get your physician to send a referral and get a pre-auth from the insurance. Also, look at applying for TEFRA. It is a federal program which grants medicaid to children who have labels so they can get the services they need, like $500 an hour twice weekly speech therapy, without bankrupting parents. Your physician's office can get you pointed in the right direction, or find a better office.

As far as sensory, we understand that school is large strain on my daughter. Do you remember how much adrenaline it was when you learned to drive? Gripping the steering wheel tightly, trying to pay attention to ever detail, fearing you were going to make a mistake. Even just an hour of driving would just drain you. That is how school is for my daughter. At the end of the day we let her come home and recharge. Video games, anime, art, books, whatever. She can control her environment, usually some headphones, blanket, cold glass of water, etc... To be honest, we only get homework done about half the time. We call it "is her cup empty?" after school. It take a lot of willpower to succeed at school. Listen to what you daughter's wants and needs, and let her be her own person. Support her interests and listen to her, even if it is boring stuff. I am sure you are doing this stuff already, but know that it matters, just being present and caring at all is more than most kids with disabilities have. I have no doubt you will succeed as a parent and as a fastlaner, just keep putting in the effort.
 

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levijean

levijean

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I appreciate these comments, please keep them coming...
 

DevDB

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My 6-year-old son exhibits much of the same behavior. Extremely high-functioning, problems with changing or unexpected schedule, emotionally volatile when in big crowds (classroom, gym, etc.), and extremely stubborn when it comes to doing something the way he needs it to be done.

We were told recently that usually at a very young age most people's brain learns to decipher and filter different senses, but those on "the spectrum" don't. Whether that's true or not, I haven't verified. One thing I do know is that he is extremely sensitive to noise. If he hears something that he doesn't want to (even if he wanted to hear it yesterday), he will melt down.

I also believe he has a higher sensitivity to touch because he is ticklish everywhere. He loves to be tickled. When he gets in trouble, he often asks to be tickled. I think this is another way of him communicating that he wants attention.

I don't know that I have much advice. Maybe to take note of repetitive and common actions and/or requests and consider what alternatives she could be communicating, but communication may not be an issue for your daughter.

Hopefully, we both can learn from this thread.
 

G-Man

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I’m not a doctor nor do a play one on tv, but there’s a DR named David Perlmutter that claims dietary therapy and a few other things can lessen the anxiety associated with autism.

Like anything else, if you google him you’ll get results that range from “he’s a genius” to “he’s a quack”.

Might be worth exploring if it will help take the edge off your little girl’s anxiety.

He has a book called brain maker.
 

Aleeysha

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My 5th grader has been having difficulties at school over the past few months and after countless visits with psychologists, counselors, school staff, etc she was finally diagnosed with autism by a child psychiatrist. I'm surprised it took as long as it did but now with the label some odd behaviors she has exhibited since birth make sense. She is high-functioning & intelligent, but cant deal with certain things out of order or surprises in her schedule. She has difficulty with peers because she thinks they should act in a particular way and she has no flexibility when she thinks something should be done in a particular way and she has little empathy. She cant handle the sensory chaos of the classroom, lunch room, recess, etc. Switching tasks is difficult. I know some people here are or have family who are high-functioning on the spectrum such as Aspergers or similar. Any advice on how my wife & I can best help her deal with her situation?
My 9 year old son is also high-functioning. At the age of 7 we switched him to a relatively low-cost special needs private school after getting his diagnosis. This has done wonders for him and our whole family. I know this may not be a viable solution for everyone. But what I've learned about coping with having an ASD child is to think outside of the box (remember not everyone offering treatment has your child's best interest at heart, sometimes its good to evaluate solutions yourself), follow your gut, and never stop looking for solutions. Every year the challenges change, so just take it day by day, year by year. Good for you for all of the steps you've taken so far including getting a diagnosis and reaching out for support.
 

rollerskates

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I've got some (quite a few, actually, we seem to have a high risk) autistic relatives that run the range from high functioning and able to live on their own to needing assisted living.

My advice: Early therapy is super important. In particular, regarding two things: 1) dealing with the unexpected and 2) communication skills/picking up social cues.

To anyone who has an autistic child: don't pretend they're not and don't put off therapy or any other needed help. It is really important to get an early start. Also, if they have siblings, make sure the siblings know how to interact with them. The autistic child will not outgrow it, so it is better that everyone learn to deal with it all early on, instead of when they all reach adulthood (trust me on this one...).

Also, nutrition. I have no nutritional advice in particular, but anyone who eats a healthier diet is going to feel better and if they are someone who doesn't feel quite right, the healthier they eat, the better. And healthy eating is eating what is right for you, not for anyone else. I cannot eat several allegedly healthy things, so that is why I say "healthy eating" is different for everyone.

Anyway, early therapy, whole family involvement, and a low stress environment.
 

mr4ffe

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I got diagnosed with autism at her age (8 years ago) and every symptom you listed holds true for me too.

Now, I believe exposure therapy can more or less cure high functioning autism. It has worked for me. I think it stems from me not wanting to be treated differently and considered an outcast, so I kind of forced myself to act how I thought "normal" people act. Usually I'd just mimic a sort of popular person, without making my mimicry too obvious. I used to be anxious on the bus or at the gym or in the school cafeteria but now I'm not (unless all my buddies are sick so I need to eat alone; that sucks). Bright lights and loud noises can still mess with me, depending on what side I wake up on, but I don't let my diagnoses define me.

The thing about schedules though? I might be a special case because I also have inattentive ADHD (formerly ADD), but I still struggle with schedules. And a change of plans means my day is ruined. It just makes me super stressed out and then makes me want to sleep the day away. Let me know if you find out how to help autistic people follow schedules!
 

Primeperiwinkle

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The thing about schedules though? I might be a special case because I also have inattentive ADHD (formerly ADD), but I still struggle with schedules. And a change of plans means my day is ruined. It just makes me super stressed out and then makes me want to sleep the day away. Let me know if you find out how to help autistic people follow schedules!
Im so glad someone who actually has autism is adding to this convo. Thank you.

Have you tried extensive time in nature by any chance? I’m talking about 4-6 hours at a time several days a week. I’ve seen it help a lot of people in ways they didn’t expect - like adapting to schedule changes.
 

mr4ffe

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Have you tried extensive time in nature by any chance?
I have not. I do however live in a calm area, right by a huge nature reserve, so it's not like I live in the middle of a noisy city. I'll try to spend more time outside as it gets warmer and see if it helps, but 4-6 hours sounds tough to reach.
 

Primeperiwinkle

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I have not. I do however live in a calm area, right by a huge nature reserve, so it's not like I live in the middle of a noisy city. I'll try to spend more time outside as it gets warmer and see if it helps, but 4-6 hours sounds tough to reach.
Yeaaaa 4-6 hours is kinda crazy but if you aim for the stars... you at least bump your head on the moon. Lol. Good luck.
 

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My 5 year old daughter was diagnosed with ASD this year and she is high functioning. I second all of the replies so far. The thing with ASD is that it is a spectrum and that no one treatment or therapy works the same for everyone. My daughter is more hypo-sensitive to external stimuli, so a lot of things don't bother her, but she also is more in her own world and it's harder to get her attention. She is constantly fidgeting as well. My niece is also ASD, but she is the opposite, hyper-active, talks to everybody, and has no boundaries.

Continue to ask questions and try different methods to find out what works well for your child. Speech therapy seems to have the most impact for my daughter so far and she has improved vastly in her communication, which has been the biggest struggle so far for us and for her being able to make friends. Find therapists and doctors that want the best for her. I agree with Aleeysha that not everyone that offers treatments has her best interest at heart.

Good luck on your journey. Remember that your child is still the same person that you have always loved and that she isn't a label. She is still a unique person that just thinks differently from others, so you may need to make some adjustments to her education and environment that helps her excel.
 

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