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[Captain Tuttle]

I have to say, I really appreciate the spectrum-Gaffers participating in this thread, your insights are hugely valuable and your advice greatly appreciated. There's more I want to say but I'm having trouble getting it down so it makes sense.

Thank you about sums it up. Your posts mean a great deal to me (and my wife who's reading this thread over my shoulder).

 

[deadlast]

I have to say, I really appreciate the spectrum-Gaffers participating in this thread, your insights are hugely valuable and your advice greatly appreciated. There's more I want to say but I'm having trouble getting it down so it makes sense.

Thank you about sums it up. Your posts mean a great deal to me (and my wife who's reading this thread over my shoulder).

I feel the same way. It almost like having a game genie for my son. You guys see things from angles we can't. And it gives us hope that our kids will be able to live independent lives.

Thank you all very much.

Also, thanks for the insight on the public restroom HP. I never looked at the public restroom in that light. It could explain one of my son's issues with using it.

 

[The One Who Knocks]

Drinking straight liquid is all about the texture. Straws are inefficient and we can't feel the water on our mouths as much.

The straw itself presents an issue too. Perhaps it's merely a personal dislike, but the material of the straw, and the top of it, makes me quite ambivalent towards them.

EDIT:

My son is obsessed with Mr. Incredible. We have so much Mr. Incredible stuff. He dresses up as Mr. Incredible every year (2 years so far) for Halloween. I have a feeling he will struggle with collecting when he gets older.

One thing I might suggest being wary of in the future, if you feel he'll develop some strong obsessive traits, is that obsessive thoughts (bring fixated upon certain thoughts or memories; I've no idea if this is the correct 'term' for it or how common it may be) may pose more of an issue that obsessions with regards to material items (or subjects) and I've found it helpful to write them down when they surface (I'm not sure why it helps, I assume it's because I find it easier to dismiss them while looking at them than while they're in my mind). Of course this won't be an issue for a few years, and it may not ever be an issue, but just in case it does arise, hopefully it provides some potential method for you to help him to mitigate it.

 

[HP_Wuvcraft]

Also, thanks for the insight on the public restroom HP. I never looked at the public restroom in that light. It could explain one of my son's issues with using it.

I don't like anything other than a urinal, as well.

 

[GhaleonEB]

We're in the tail end of having our daughter evaluated for autism. She's a perfect match for Asberger's, or high functioning autism. She's blindingly smart, always has been, in the top 1% or so of most subjects. But she's also totally lacking in empathy or emotional connections, shuts down completely during social or high stress environments. And she has a sister who is super emotionally sensitive. It's demolishing their relationship.

She's being evaluated at school - basically my wife and I doing paperwork and questionnaires. But that doesn't help us outside of school. We're not sure what to do, both in terms of where to start, and how to talk to her about it. Her sense of self worth is somewhat fragile, and I greatly fear that this will really undercut her if she feels like there's something "wrong" with her (I don't think there is).

Were do we start? The US medical system is a nightmare and I've had nothing but horrific experiences in it. And how do we talk to her about autism without making her feel like there's something broken about herself?

We are late to learning this. She's 11. (She's also a LOT like me when I was younger. I've learned to cope now. But I wonder how much of it she got from me.)

 

[Elchele]

And how do we talk to her about autism without making her feel like there's something broken about herself?

I don't see why she should feel bad about it, she's super smart and that's something she has ahead of the rest... sure she will have some problems in the social aspect of life but is not like she is "sick" or anything. We all are different, nobody is perfect and being high functioning autism is hardly something "bad" per se. At least from my point of view

good luck!

 

[deadlast]

We're in the tail end of having our daughter evaluated for autism. She's a perfect match for Asberger's, or high functioning autism. She's blindingly smart, always has been, in the top 1% or so of most subjects. But she's also totally lacking in empathy or emotional connections, shuts down completely during social or high stress environments. And she has a sister who is super emotionally sensitive. It's demolishing their relationship.

She's being evaluated at school - basically my wife and I doing paperwork and questionnaires. But that doesn't help us outside of school. We're not sure what to do, both in terms of where to start, and how to talk to her about it. Her sense of self worth is somewhat fragile, and I greatly fear that this will really undercut her if she feels like there's something "wrong" with her (I don't think there is).

Were do we start? The US medical system is a nightmare and I've had nothing but horrific experiences in it. And how do we talk to her about autism without making her feel like there's something broken about herself?

We are late to learning this. She's 11. (She's also a LOT like me when I was younger. I've learned to cope now. But I wonder how much of it she got from me.)

First thing I thought when reading this was this sounds exactly like that show Parenthood.

First you have to get her evaluated. If you girl needs any ABA, Then you will have to figure out if your state has autism reform or not. That's easy to find on the autism speaks website. If you live in a state that has reform, then insurance will cover some of the costs.

Since she is older and smart, maybe just being straight about her diagnosis would best. Highlight the positives and don't be sad.

 

[Captain Tuttle]

We're in the tail end of having our daughter evaluated for autism. She's a perfect match for Asberger's, or high functioning autism. She's blindingly smart, always has been, in the top 1% or so of most subjects. But she's also totally lacking in empathy or emotional connections, shuts down completely during social or high stress environments. And she has a sister who is super emotionally sensitive. It's demolishing their relationship.

She's being evaluated at school - basically my wife and I doing paperwork and questionnaires. But that doesn't help us outside of school. We're not sure what to do, both in terms of where to start, and how to talk to her about it. Her sense of self worth is somewhat fragile, and I greatly fear that this will really undercut her if she feels like there's something "wrong" with her (I don't think there is).

Were do we start? The US medical system is a nightmare and I've had nothing but horrific experiences in it. And how do we talk to her about autism without making her feel like there's something broken about herself?

We are late to learning this. She's 11. (She's also a LOT like me when I was younger. I've learned to cope now. But I wonder how much of it she got from me.)

I remember those questionnaires, are they the ones that you and your wife fill out separately? They're doing her eval at school with the school psychologists. If she's diagnosed she'll get what's know as an IEP. This is a legal document and it will spell out her treatment plan, goals and expected results for her. It's updated every year and if you ever want to change it you just ask for a meeting. Understand that the parents are considered valuable members of the treatment team, we've had quite a bit of success in tailoring the treatment to our son's needs. I know that here in PA once you have a diagnosis they encourage you to put the kid on Medicaid; with that diagnosis they are eligible. It allows the schools to tap into that revenue for services and also allows you access to outside services (they call it "wrap-around"). Wrap-around is an individual counselor separate from the school or therapist that will work with your daughter, ours was very helpful. There's no financial limit on the Medicaid stuff, your child is automatically eligible with that diagnosis, it doesn't matter how much money you make at all. Basically what I'm saying is to take all of the help available to you.

Regarding her self-esteem, it seems like your daughter is similar to my son; high functioning academically and has difficulty in social situations. Rather than try to force him into socializing like we used to we now try to put him in situations where he will find kids similar to him. He's done Computer Camp in the summer, lots of kids who struggle socially in there with him. Also a Minecraft camp. At school he has an aid part time who encourages him to interact with other kids who have similar traits as him. He's no social butterfly but he has a couple of really good friends that allow him to feel "typical" when he's with them; they understand his quirks and he understands theirs. Also because my son does so well academically he gets alot of his self-esteem from that and we encourage it. Maybe try a similar approach with your daughter. She's different (we all are and the good thing is that this is really drilled into kids at school these days) so emphasize her strengths and try to put her in situations where her weaknesses don't matter or stick out as much. Therapy will give her the tools to deal with social situations and also work on her self-esteem.

Good luck Ghaleon, we've all been where you are right now and frankly it's the low point of this whole process. Once your daughter starts the process of treatment things will get better.

This is a wall of text and I apologise for that and I've likely missed something. Post here with questions or feel free to PM me with anything at all.

 

[HolyBaikal]

I would recommend multiple evaluations, if possible. Yes, a someone trained with a degree will have more qualifications to diagnose. But many people in the field are very poorly educated. I don't honestly trust psychologists and psychiatrists as a whole.

I think that you need multiple opinions on matters like this.

Also, empathy is an interesting, and possibly somewhat lacking. Empathy is considered an important trait for feeling compassion. And yet many of the autistic people labeled as lacking in empathy are extremely compassionate. And many autistic people take issue with being labeled as unempathetic. In fact, there's a lot of articles and blogs online from autistic people trying to dispel the notion that they're not empathetic.

The problem, it seems, is that people mean different things by empathy. And since autism is a spectrum, some people could be more empathetic than others. While, for some people, they may be extremely empathetic and even be unusually compassionate and concerned for others, but simply bad at reading social situations, leading to doing insensitive things.

Unfortunately, saying that she's "totally lacking in empathy" gives me more questions than answers. Also, since I don't know your family situation, I don't know to improve her self esteem or self worth. It's very common and often a good idea to compliment how smart she is. But I'm sure you do that a lot already. But I don't know what to recommend other than focusing on how gifted she is, as I don't know enough about her and your situation as a family.

 

[sonicfan]

Let me first say the that this thread is about a journey, my family's journey with my son who appears to be on the Autistic Spectrum. He has not been officially diagnosed, as it takes forever to get an appointment for screening. He will be turning 3 at the end of June.

Nothing Physical...
My son was born about 5 days earlier than his expected due date and has never shown any signs of physical issues other than being in the low percentiles for high and weight. No worries there he is just a little guy.

If I would have saw the signs, they would have opened my eyes...
First sign that something wasn't quite right. He doesn't process pain like a normal person. He never cried during his immunizations or other shots. Usually babies freak out when someone stabs them with a needle. I was a dummy. I thought I had a little bad ass on my hands.

Second sign, he never smiled at us. We would smile and play peek-a-boo, nothing. We would tickle him and he would laugh and smile. But he would never return a smile. In fact, he would always have a grimace (grumpy look) on his face. Kids should never just be sitting there looking pissed off. They should return smiles and be able to process emotions. To this day my son does not process emotions like other kids his age and young. And he does not return smiles.

Third sign, he doesn't respond to his name. I'm pretty sure he knows his name. But when you call his name he won't look at you no matter how many times you say his name. However, sometimes he will spontaneously look at you after the first time you say his name. We were fools. We thought he was just off in his own little world, even after the Doctor confirmed there was nothing wrong with his hearing.

Fourth sign, he doesn't look me in the eyes when he responds to me. This is another issue that we ignored, because he would look us in the eyes all other times. We chalked it up to shyness.

Fifth sign, he plays in parallel. This is a tricky one. My son will not engage other kids in play. He will, however, sit next to other kids and play by himself. The only kids he will play with are his brothers. But he will never engage in pretend play with them.

Sixth sign, he doesn't show affection like other children. This is a weird one. My son doesn't give kisses. He allows you to kiss him, if you ask for a kiss. But he only allows kisses sometimes.

I have a whole list that goes on and on. But I'm not going to post all of them.

The Journey Begins...
Just before my son turned 2 we had him evaluated by the State's Infants and Toddlers (InT) program, because he exhibited abnormal social behaviors compared to his older brother and other neighborhood kids his age. InT came out and said he was just a little behind on his social skills, but his communication skills were very low for his age. So the State put him on their speech program. Which was one of the best things that could have happened for him.

We also put him in a 2yr old preschool program. While in the program we would get reports from the school that he was doing fine. Then during the Parent Teacher conference, the teach wrote up a report that made it sound like our kid was autistic and that he should repeat the 2yr old program. We immediately flung ourselves in a state of denial. How could this be right we asked ourselves. Our child does not act like this at home or with the Speech therapist. Even the Speech therapist baulked at the report from the school. Not long after receiving that report we signed him up for the 3yr old program, after my wife and the director agree that he could move forward. However, 2 weeks ago we were told that my son could not move to the 3yr old class the following year and that the 2 yr old class was full. Effectively he was kicked out of Preschool, for the following year.

Now what? Well we started taking the assessment a little more seriously. We started monitoring our child's behavior more closely. With 3 boys (under the age of 5) running around the house that is extremely hard. We started noticing things that didn't seem typical. We started doing some reading and noticed that a lot of his quirky behavior were signs of autism. So my wife and I started talking to people who had autistic kids about how to find out more about it. There are several checklist online, tons of books, and websites that have loads of information.

Doctor, Doctor....
OK, so we did an abundance of self diagnoses. But does that count, some what. We had to find out if our son is on the spectrum or not. Or does he have something completely different. Well the insurance agency was no help when I called them. The first they told me was find someone who could help me. So we contacted 2 facilities that perform the autism tests and both of them told us we wouldn't be seen till late summer or the fall. Also, neither one is in our local area. This wouldn't have been an issue, but the state was stopping Speech for my son because he is not considered to be extremely delayed anymore.

Lucky for us my wife found a person that is opening a private practice that specializes in pediatric development, locally. Our first appointment is on April 15th. This will most likely not be covered by insurance, but I don't care. This is the most important step. If we know the issue is, we can get our son the help he needs.

I will post more info later and hopefully have some videos to share. I hope this will help others.

Interesting, I was never diagnosed with anything, but some of this does sound like me as a kid. I was sent to a doctor because I was very late with speech. Maybe at worst, I have a very very mild form of it.

We had a friend years ago who had a son that just one day "turned off". He seemed normal until about 2 1/2 or three, then just totally went into a shell, into his own little world, that is what I used to think autism was. After hearing about and learning about
Asperger syndrome, I thought that described me more than anything, but only to a degree. And I would say that I am much less like this as an adult than I was as a kid....

 

[LostInNoise]

Are the stacking/lining things up, being a picky eater, not being bothered my shots/pain, being emotionless, etc really definite signs of Autism or is it something you can kind of relate back to it? I'm 24 and reading through this kind of makes me relate to a lot of your guys' kids and realize I still do what a lot of them are doing...makes me wonder a little bit now.

 

[deadlast]

Are the stacking/lining things up, being a picky eater, not being bothered my shots/pain, being emotionless, etc really definite signs of Autism or is it something you can kind of relate back to it? I'm 24 and reading through this kind of makes me relate to a lot of your guys' kids and realize I still do what a lot of them are doing...makes me wonder a little bit now.

http://aq.server8.org/

Not sure how reliable that self diagnoses test. But it's worth a try.

 

[iJudged]

Indeed a good parent here. Wishing you nothing but the best. I hope everything works out alright.

 

[Elchele]

Is it relatively easy/quick to diagnostic Asberger syndrome in adults? I've been reading a bit and I feel 99% identified.

 

[HP_Wuvcraft]

Is it relatively easy/quick to diagnostic Asberger syndrome in adults? I've been reading a bit and I feel 99% identified.

1) No. AS is one of the hardest of the mental disorders to diagnose just because it is so varied and nuanced.

2) "I've been reading a bit" ... never good enough. Reading a little bit leads to thinking your stomach pain is cancer. Get an official diagnosis if you are so inclined.

3) Aspergers. Pronouncing it Ass Burgers is going to get your ass kicked.

And how do we talk to her about autism without making her feel like there's something broken about herself?

That's tough. First of all, ignore anyone that says "there's nothing wrong with her" or that has some knee jerk reaction as if you're a horrible parent for even having The Talk with her.

And believe me, you will come up against both. In spades.

She's 11. She has autism. That's a thing.

I would start by explaining how the brain works, and then go from there. Tell her about how it doesn't make her physically or mentally different from any other kid, it's just that she's wired to feel and interpret things a bit differently. She still feels the same emotions, just a bit differently. She still thinks the same way, just a bit differently. Try to steer away from "you're better than them" or "you're special". Let her know that it is in no way okay to use her autism to get what she wants, or as an excuse. Your goal here is to comfort your child and reaffirm that they are not a monster. You should educate them on the basics of the disability, and if they want to know more right away, it won't hurt to feed them that knowledge. Keep them the hell away from groups such as Autism Speaks, which treat autism like an ongoing car crash. If you want, enroll them in an autism support group at Kaiser or some such place.

 

[Huw_Dawson]

Aspie-GAF member here. About one in a hundred kids have some form of AS, so don't feel alone if you have a child or young adult diagnosed! There is support.

Living with Aspergers can be challenging sometimes. I am quite fine most of the time, but little setbacks and annoyances can really get to me. Bad social situations also are a nightmare sometimes. Even these days I've burst into tears due to bad situations.

But like I said, I am quite fine most of the time. People on the AS see the world in different ways. I like seeing systems and designs at work, so I really like travelling. I also have silly levels of focus sometimes. But on the flip side I find it extremely hard to break routines.

The internet is a godsend for people with AS. The range of social nuancess is reduced, so it is far easier and less stressful to communicate via it.

 

[HP_Wuvcraft]

Just wondering how Autism-GAF spent the holiday. I'm assuming most of us will be in for New Year's.

 

[p_xavier]

Just wondering how Autism-GAF spent the holiday. I'm assuming most of us will be in for New Year's.

Alone. Though I started construction on my new loft which calms me. I'm thinking of buying a pet as a resolution in 2014.

 

[deadlast]

Just wondering how Autism-GAF spent the holiday. I'm assuming most of us will be in for New Year's.

My son got extremely over stimulated. He is just now finding his center. But on Christmas Day he was doing lots of repetative behaviors and pacing a lot.

I'm thankful we have nothing going on for New Years.

How was everyone else's holiday break?

 

[Mistel]

Just wondering how Autism-GAF spent the holiday. I'm assuming most of us will be in for New Year's.

Most likely I will be at home i'm really awful socially when I'm not comfortable in the surroundings. That said I can talk non stop when I am. I was diagnosed a year and a bit ago as high functioning.

Spoiler

transgender female as well so that kinda plays a role as well socially

 

[Imperial Hot]

My little brother (15) is pretty low-functioning with a diagnosis of PDD-NOS. He seems to understand everything that is said to him or said around him, but it has only been a recent development (well the past five to six years) that he's been able to respond verbally. A lot of the way he communicates to us is through a formulaic, prefabbed sentences and phrases that have been taught to him.

However, tonight he was in his room on the computer and he was drawing a yellow school bus (he's really, really good with the computer) and he started to cry when my mom went into the room. When my mom asked him why he was crying he said "Autism. No school bus".

I guess he really wants to go on the school but, but he takes his own transportation to school and well I guess he's really starting to become aware of the limitations imposed upon him by his Autism.

I don't really know where I am going with this post, but I just wanted to get it out there because honestly it was pretty heartbreaking. He has very rarely shown awareness of the fact that he has Autism. My mom was really, really upset when he started crying about not being able to ride the school bus due to his Autism...

 

[dLMN8R]

Hi everyone. Has anyone here read this book, The Reason I Jump?

I read it out of curiosity after seeing the author promote it on The Daily Show, and it was remarkably enlightening for me who luckily has no personal involvement with autism. It seems like the type of book that might help someone who has someone they care about with it. It's a very quick read but will stay with me for a long time.

 

[Tragicomedy]

Hi everyone. Has anyone here read this book, The Reason I Jump?

I read it out of curiosity after seeing the author promote it on The Daily Show, and it was remarkably enlightening for me who luckily has no personal involvement with autism. It seems like the type of book that might help someone who has someone they care about with it. It's a very quick read but will stay with me for a long time.

I read the entire thing the day it was released in the US. It's quite short, but absolutely awesome. I realize that not every person with autism is the same, but there were a lot of very interesting and moving insights into certain behaviors. The toughest part was reading the kid repeatedly ask for people to not give up on him or others on the spectrum. He talks a lot about why he does certain things, and how he feels compelled to do stuff even though he doesn't want to and knows he'll get reprimanded for it. His explanation for why he does certain behaviors were so emotionally touching it's hard to describe. Case in point: he jumps because he feels like he's lifting his feelings and thoughts to the sky.

I think the biggest reason I liked the book was that it's a fresh perspective. My wife has read all the Temple Grandin books, we've seen her movie, and I read a few of the parenting books or memoirs of adults on the spectrum. While all those were valuable in their own way, you have to approach them from the perspective that the authors are already adults and have learned to cope with a lot of their issues. Temple Grandin is amazing and very inspiring, but I'm not sure how applicable her story is to my son. By definition, Grandin has grown into an extremely successful, self aware, and self-sufficient adult. That's the dream for every parent with a kid on the spectrum, but she's writing as a person who has led a remarkable life.

The beauty of The Reason I Jump is it is written by a young teenager who is in the midst of that growth experience, and learning to cope with every day life. He isn't a grown adult reflecting retrospectively on a challenging journey...he's facing those challenges on a daily basis. He's remarkably intelligent, but comes across as quite a bit lower on the spectrum in terms of functioning. He uses a tap code and a computer keyboard to communicate instead of speech, which makes the existence of the book all that more impressive.

In short, phenomenal book. Five stars. Short read that is definitely worth your time.

 

[HP_Wuvcraft]

Most likely I will be at home i'm really awful socially when I'm not comfortable in the surroundings. That said I can talk non stop when I am. I was diagnosed a year and a bit ago as high functioning.

Spoiler

transgender female as well so that kinda plays a role as well socially

Jesus. Good luck to you. Having something else with autism is hard enough (I'm personally going through an intense conflict with a Deaf Autie in my support group right now), but I can't even imagine autism with a social handicap that you yourself chose to come out with.

 

[sqwarlock]

http://aq.server8.org/

Not sure how reliable that self diagnoses test. But it's worth a try.

Having identified with a lot of what you all are saying about your kids, I took this. Twenty-nine years old and I scored a 25. Not sure what that means, but according to the chart I can rule out autism/asperger's.

My mom always says that, had she taken me to a test center as a toddler, I probably would have been marked as being somewhere on the spectrum. I've always felt a little out-of-place, but then again I've also got clinical depression and social anxiety disorder so I'm sure that plays a part in it.

Still, autistic or not, I was always treated as an outcast by my peers and it affected me quite a bit (hell, it still does). Please, take care of your children and love them no matter what may come. That's what my mom did, and I can't thank her enough.

 

[Mistel]

Jesus. Good luck to you. Having something else with autism is hard enough (I'm personally going through an intense conflict with a Deaf Autie in my support group right now), but I can't even imagine autism with a social handicap that you yourself chose to come out with.

I'm not sure really how well everything will pan out but I hope for the best in the future after all my transition surgery and stuff is done, I hope to have a paleontology or paleobotany degree in the future.

Spoiler

Really like dinosaurs and fossils and stuff (see halogaf for proof of that)

 

[siddx]

I took a year off while getting my masters degree in education and took the opportunity to work at a preschool/after school program for kids with disabilities. One of the kids I worked with for the aftersschool portion was the 10 year old son of the owner of the place. When he was diagnosed with autism, the doctors told her he was so severe that he would never be able to function in society and all the mother could do is try to make his home life comfortable. She said to hell with that and spent years learning every technique and theory on treating autism. It wasn't easy, he had some really really rough years, but now he is a fully mainstreamed student in school with no ed tech. He gets good grades, has friends, and most remarkably is fully aware of his struggles and how it makes him different, but not "bad" or "broken" or "inferior". There are still struggles for him, and always will be. But he is also one of the nicest, most loving, genuine people ive ever had the privilege of knowing. It's remarkable to be able to see pure emotion from someone. I never realized how much we all temper or manipulate our emotional output. Whether faking an emotion for the benefit of a situation, or muting how we would really want to respond for fear of looking silly or weird. But when he was happy, he was straight up happy. No bullshit, no walls, no faking, just pure and real joy. And it was the same with anger or sadness. It was eye opening and moving to see. I want to go on more about that aspect but to be honest I am really out if right now and typing on my phone is a hassle. I fear I can't do the topic justice.

 

[Mumei]

I just came across this article today. It's fascinating, and I thought some of you might find it interesting.

 

[Tragicomedy]

I just came across this article today. It's fascinating, and I thought some of you might find it interesting.

Yep, posted back on page two (for us 50 PPPers). Absolutely worth the read!

 

[Mumei]

Yep, posted back on page two (for us 50 PPPers). Absolutely worth the read!

I should have known it was already posted.

Oh well. I read the argument about cognitive versus affective empathy in one of the books I read this year, and it's an important distinction.

 

[TEJ]

I've had autism for almost 20 years, was diagnosed at around 8.

It's been a long struggle of a life, taking me longer to do things that a normal person will.

My advice to parents here with autistic children? Don't give up on them if they can't do the simplest of things, they'll eventually learn it or get to it. It just takes time.

Also, tell them not to be afraid to ask you about things like "what should I do in a situation" or "will doing this be a good idea?".

Another hing is, they will eventually broaden their horizens. It took me 20 years to appreciate mustard, and i'm a LOT more adventurous with what I eat {though, I was never really a picky eater}.

Also, be flexible with them, but not to the point of spoiling them and letting them walk all over you.

I was blessed to have a mom and dad who understood what I went through.

 

[ronito]

My youngest, (he will turn 3 in Feb) was diagnosed a few weeks ago as being moderately autistic. He placed between 6 and 7 on the scale. So far he's just had developmental delays (it took him forever to walk) and as far as his sentences go are things like "Hi Dad!". Also he is an incredibly picky eater due to his aversion to textures. He's almost three but really he's developmentally around 18 months-ish. Thankfully due to Easter Seals he's getting a lot of help but it's very slow going. We're meeting with the school district facilitator soon to try and sort out what will happen after he's 3. So we'll see.

 

[Tragicomedy]

I should have known it was already posted.

Oh well. I read the argument about cognitive versus affective empathy in one of the books I read this year, and it's an important distinction.

I find the intense world theory fascinating, in the sense that it provides hope and explanation for certain behaviors.

Reading that article brought my son to mind so many times. He was definitely born completely "overwhelmed" by the world around him. He was under so much distress that his heart rate raced and plummeted several times during his birth, and he had passed his first bowel movement inside the womb. We spent the next three months unable to calm him down, cheer him up, or basically anything. My wife and I felt like we were terrible parents, since our son fussed and cried nonstop. We were the most active and involved parents ever, but nothing worked. He would eventually cry himself to sleep and we'd get 30 minutes of respite.

We took him to the hospital at least five different times to have him checked. Surely something had to be wrong. The specialists tested him for stenosis, allergies, nerve functioning, what have you. The final diagnosis: our son had colic, which is a fancy term for unexplained and sudden pain. We researched colic thoroughly and the bottom line is nobody knows what it really is or what it means, though it's potentially tied to intestinal pain. Okay, nothing we can do there but wait it out.

My son was hyper alert of his surroundings. He held his head up well before his peers and constantly and intently looked at everything. As he aged, he didn't display any signs of physical delays (crawled, walked, and talked early), but the lack of emotional response and withdrawal was clearly there. He avoided eye contact, didn't respond super favorably to touch, and generally seemed uncomfortable in his surroundings.

When I got back from my deployment, he was eleven months old and preferred solitude over social interaction. He wouldn't really "play" with my wife and me, and would often go into his bedroom and play by himself for hours. We didn't know this was abnormal or a negative indicator, and friends and family would praise him for being so independent. As if.

With intense therapy and lots of love and attention, he's grown to be okay around adults he knows and is getting better around other kids (children are more unpredictable than adults and therefore cause anxiety for him). He's super affectionate, loves hugs and kisses, and likes to have us involved in what he's doing.

Before I write a huge book here (sorry, too late), I believe looking back now that he was in a state of sensory paralysis when he first came into the world. Everything was too damned bright, too damned loud, and too damned weird to the touch. He was born with autism, but I believe the sensory overload led him to prefer isolation and silence over the hustle and bustle of human interaction. I'm not scientist or brain researcher, but to me it adds up.

 

[TEJ]

My youngest, (he will turn 3 in Feb) was diagnosed a few weeks ago as being moderately autistic. He placed between 6 and 7 on the scale. So far he's just had developmental delays (it took him forever to walk) and as far as his sentences go are things like "Hi Dad!". Also he is an incredibly picky eater due to his aversion to textures. He's almost three but really he's developmentally around 18 months-ish. Thankfully due to Easter Seals he's getting a lot of help but it's very slow going. We're meeting with the school district facilitator soon to try and sort out what will happen after he's 3. So we'll see.

easter seals was a godsend. due to them I was able to land my first job which lasted 8 years.

 

[HP_Wuvcraft]

I just came across this article today. It's fascinating, and I thought some of you might find it interesting.

There's a quote Abed has in season one of Community:

"I have to retreat into other worlds. It's the only way this one makes sense to me."

 

[deadlast]

Does anyone's kid(s) hate sleep as much as mine does?

My little guy likes to be up before 5 am most mornings. This wouldn't be an issue if would entertain himself. But he works very hard to let everyon on the block know that he is awake.

 

[Mistel]

Does anyone's kid(s) hate sleep as much as mine does?

My little guy likes to be up before 5 am most mornings. This wouldn't be an issue if would entertain himself. But he works very hard to let everyon on the block know that he is awake.

When I was little and to an extent now I struggle with sleeping I've got got quite erratic sleeping patterns which usually result in about 4-5 hours of sleep max. Does he struggle settling down or staying asleep?

 

[deadlast]

When I was little and to an extent now I struggle with sleeping I've got got quite erratic sleeping patterns which usually result in about 4-5 hours of sleep max. Does he struggle settling down or staying asleep?

4-5 hours, does that affect you during the day?

It takes him a while to fall asleep. But he usually sleeps deeply for a while. But when wakes up, he's up.

 

[Captain Tuttle]

Have you guys tried using Melatonin? I've heard of it working decently with other spectrum kids who have trouble sleeping. I'd run it by your Pediatrician and/or therapists first though.

 

[ronito]

Does anyone's kid(s) hate sleep as much as mine does?

My little guy likes to be up before 5 am most mornings. This wouldn't be an issue if would entertain himself. But he works very hard to let everyon on the block know that he is awake.

Thankfully mine doesn't do that. He's great with sleep. Even if he doesn't sleep he entertains himself. Well now. When he was a baby it was hard for the first 6 months-ish.

 

[deadlast]

Have you guys tried using Melatonin? I've heard of it working decently with other spectrum kids who have trouble sleeping. I'd run it by your Pediatrician and/or therapists first though.

We have him on melatonin now. I think that helps him fall asleep a little easier, but it doesn't help him sleep more.


Ronito - what does your son do to entertain himself ?

 

[cryptic]

Having this is the worst thing in the world.

Prior to being informed I suffered from it I conducted myself as a regular boy though I understood I was unique but I determined it was just a result of all my choices.
When the reality hit as I was informed of this at 14, that everyone was absolutely right to ever laugh at me for silly mistakes and that there was something wrong with me and not others when I couldn't fit in; it shattered me.

It broke my confidence to know I was just a simple mental case completely averse to any normality by virtue of existing,destined to always be alone. Everyone has every right to think I'm weird, hate me, acknowledge me as worthless because I can't do what they do.
I'll never find a good job, be able to seal the deal with any girl I like, and my depression has gotten so bad I can no longer articulate and even speak properly and I used to be always commended for my ability to articulate. It sounds small but it was a part of me I loved that I lost now.

7 years of just being a worthless dishwasher, all an autistic person in abject poverty, alone and unable to form new friendships, no one helps, -but I can't ask-they lie habitually. I can't talk to anyone, my pride tells me the truth, if anyone ever were to know I was autistic they'd just pity or laugh at me, laughing in the sense must people just patronize your displays of what( and laughter comes from pain, man is cold enough as it is without this). Oh yeah, that poor cryptic, he hates himself, we have to help, but how, tell him little compliments and leave him alone while he wonders about himself, pulling apart everything he does everyday as he speaks or in the after while alone, questioning his every action like sifting gold among stones to find something from me, mine, genuinely mine not just a fault of this disease.

I'm just a machine, no individual trait to be valued and esteemed, all perverted like an inbred, all my life just a dissertation of the associations of a psychologists prognosis,I shouldn't have left the lab; letting myself be seen more kindly, more me, crushed me, kids with this, all remember to be tough and keep your friends even if you have to buy them.

I also am having difficulty sleeping now but I think it's because I need to walk after I eat my last meal or high cortisol. I wonder if some of you people could maybe walk your kids or do something physical like catch with a ball; my hand coordination is good and it might be in part from sports at a young age. Also,when I was younger my parents would walk with me about a mile or so away and I'd be skipping the whole time, right into bed at the end.

 

[ronito]

We have him on melatonin now. I think that helps him fall asleep a little easier, but it doesn't help him sleep more.


Ronito - what does your son do to entertain himself ?

Well before he didn't. But now he plays with his cars. For nap I'll actually give him a car and maybe a book. I'll often go in and see him playing with his cars.

 

[Mistel]

4-5 hours, does that affect you during the day?

It takes him a while to fall asleep. But he usually sleeps deeply for a while. But when wakes up, he's up.

Most of the time it's not that bad but any less sleep and i'm incredibly grumpy and moody throughout the day. I cant really sleep during the day either, the only way I can sleep is if it is pitch black any brighter and i'm kept up by it.

 

[deadlast]

Happy new year Spectrum GAF. Heads up don't take your kids to Buffalo Wild Wings. My kid was stimming like crazy to filter out all of the fucking information he was being bombarded with. He did really well with the situation we put him in and I'm super proud of how he handled it.

 

[Captain Tuttle]

Happy new year Spectrum GAF. Heads up don't take your kids to Buffalo Wild Wings. My kid was stimming like crazy to filter out all of the fucking information he was being bombarded with. He did really well with the situation we put him in and I'm super proud of how he handled it.

Yeah, my son went back to school yesterday and did well for the most part. He struggled during lunch though, he called the cafeteria "brutal", too loud for him.

Anyway, Happy New Year

 

[aett]

My son starts his special ed preschool program on Monday. I'm really excited, although I'm sure things at home will be very difficult for a while until he gets used to all the work since he'll still be doing ABA three times per week as well as OT and Speech once per week each. The school cuts into his naptime by about half an hour, so I'm worried that he'll end up falling asleep on the way to his grandma's house, which will make him extra cranky for the rest of the day. Additionally, I think that one of his ABA sessions is going to be at 2 or 3 in the afternoon, so he'll basically get no nap on that day AND have to do extra work.

 

[Tragicomedy]

My son starts his special ed preschool program on Monday. I'm really excited, although I'm sure things at home will be very difficult for a while until he gets used to all the work since he'll still be doing ABA three times per week as well as OT and Speech once per week each. The school cuts into his naptime by about half an hour, so I'm worried that he'll end up falling asleep on the way to his grandma's house, which will make him extra cranky for the rest of the day. Additionally, I think that one of his ABA sessions is going to be at 2 or 3 in the afternoon, so he'll basically get no nap on that day AND have to do extra work.

Sounds similar to my son's schedule except he does ABA five days a week and preschool four. His schedule removed any possibility of nap time, but he adjusted within a week. Assuming your son is three, kids start naturally phasing out nap time around that age. The side effect is my boy falls asleep more quickly at night since he's pretty worn out by then.

For the record, we were terrified the first day we sent him to preschool, and now it's his favorite thing in the world. He's the only special needs kid in a fully integrated classroom, with 9 kids and 3 teachers. One of the teachers basically helps him with anything he struggles with, and he is super affectionate and friendly with her. It's an awesome setup that I wish more places would incorporate.

On long weekends, my boy will come up to me with his shoes and ask me to take him. I hope your kid has a similar experience. Is his classroom integrated or mainly special ed?

 

[HP_Wuvcraft]

Having this is the worst thing in the world.

Only if you let it be.

Prior to being informed I suffered from it I conducted myself as a regular boy though I understood I was unique but I determined it was just a result of all my choices.

They are. You can either let yourself become a victim or learn how to come to terms with your autism.

When the reality hit as I was informed of this at 14, that everyone was absolutely right to ever laugh at me for silly mistakes and that there was something wrong with me and not others when I couldn't fit in; it shattered me.

They were in the wrong to laugh at you, and there is nothing wrong with you.

It broke my confidence to know I was just a simple mental case completely averse to any normality by virtue of existing,destined to always be alone. Everyone has every right to think I'm weird, hate me, acknowledge me as worthless because I can't do what they do.

... are you trolling right now?

Your language is way too harsh, you are being way too down on yourself. All you need to do is read this thread to realize that autism is not some sort of death sentence that makes you an inhuman monster.

What it seems would really benefit you is to read books on autism. Educate yourself. Do a run or a walk for autistic charities (but stay away from Autism Speaks).

Do anything but lock yourself into an ignorant state.

I'll never find a good job[/quote[

Not true. While you may have difficulties working in a "normal" environment or keeping a job, it is absolute poppycock to think that you are unemployed for life just because you have autism.

I just got out of a seasonal job in a very tiny shoe store, and mostly all of the time, I wanted to run away. But I still did it.

my depression has gotten so bad I can no longer articulate and even speak properly and I used to be always commended for my ability to articulate.

You need to seek help in that case.

It sounds small but it was a part of me I loved that I lost now.

Did someone cut off your arm? Zap away your memories? You are still you. A diagnosis changes nothing about who you are.

no one helps, -but I can't ask-they lie habitually.

You really need to find a way to get over this shit. You are very close to becoming one of those auties that thinks they are better than everyone else. That is the exact polar opposite of hating yourself, which is where you are now.

But only you can help yourself. Another's words can only go so far.

I really can't quote any more of your post. It's a bunch of self-hatred that only you can stop. For some odd reason, you think that everything has changed forever irrevocably after you - what? - left wherever it was that you got diagnosed?

Ask yourself: how? How did everything change? Then you'll start to realize that nothing has changed.

You need to meet other auties. It really sounds like you are extremely ignorant of your own community, let alone your own neurological disorder. Which is the worst place to be in. You also need to seek help for your depression. That's no good.

I hope you get better. I do.

 

[Tragicomedy]

What it seems would really benefit you is to read books on autism. Educate yourself. Do a run or a walk for autistic charities (but stay away from Autism Speaks).

Great post, btw. I won't pretend to understand all he's going through other than to say it sounds like he's treating his diagnosis as a death sentence when it's not. He's the same person today that he was yesterday. That's part of the reason my wife and I are debating about how and when to tell our son, if at all. He's the person we love unconditionally, and the label just helps us get him help and understand some of his behaviors. We don't want him living his life based on the belief that's he's limited or destined to be a certain way.

I haven't gotten involved in autism groups or anything, so can you elaborate on the Autism Speaks comment? I'm slightly familiar with them, but didn't know there was a negative aspect there.