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[No Love]

My brother being diagnosed with autism was one of the catalysts that destroyed my parent's marriage many years ago. Don't let it bring you down and ruin a beautiful future.

Autism is a beautiful thing. While I know my brother will never be a 'normal' brother, he is still wonderful and amazing to know in his own way. His childlike sense of wonder and imagination (he's 18) can be enlightening and amusing. I'll never fully understand what it's like to be him, but I will say that I wouldn't change a thing about him.

The other night when he was visiting me, he told me "I don't want to be autistic anymore, it's a curse." I told him "No, it's not. It's just how you are. And there's nothing wrong with it. You see the world in a way that other people never will, and it's not wrong. It's just different. And that's ok."

Yeah, it broke my heart, but it also shows me that I need to work with him more on becoming mainstream and getting into college classes so he can learn and function in society.

 

[Ooccoo]

I worked with autistic people and I was disgusted by how much bureaucracy there is. The government really only cares about money. Of course there are a lot of hard-working, loving professionals but transfers and services can take MONTHS to happen, even though they're needed and/or urgent. The truth is there are not enough places (at least here) and the demand is higher than before.

It's also very difficult for autistic clients to build links with others because the people who follow them are often on call or switch from one place to another. It's also a very rough job: we've seen many quit due to burnout or stress. I must say some places are actually very dangerous with few if any tools deployed to accomodate the situations.

Autism reminds me of elderly people: both need better services, but it does not happen because of costs. Instead, a lot of people are banking on them ($70k+ per year) and, in the case of the elderly, letting them die (I swear), feeding them shit no one would like and not caring.

 

[Mumei]

I read this book last week, and if anyone would be the target audience for a book like this, it'd be the people in this thread. Fair warning: I cried before page 40, and that wasn't the first time.

 

[HP_Wuvcraft]

The government really only cares about money.

Amen.

It's disgusting how they will try to discredit you at every turn.

I was sitting right next to a dude who was denied disability. He asks "how am I supposed to survive?".

The answer? The honest-to-God answer from a Federal Employee?

"Friends and family".

My brother being diagnosed with autism was one of the catalysts that destroyed my parent's marriage many years ago.

I don't fuckin' get this.

Unless the mom or dad just gets up and leaves, then the child is still going to be in their lives. And it's going to be even more expensive and even harder to look after them on an individual basis. Plus having to coordinate.

Jesus.

 

[Tragicomedy]

I don't fuckin' get this.

Unless the mom or dad just gets up and leaves, then the child is still going to be in their lives. And it's going to be even more expensive and even harder to look after them on an individual basis. Plus having to coordinate.

Jesus.

Not much to get, sadly. There's so much stress and worry for the future involved with finding out that your child is different, that it strains the relationship. Some want to find the "reason" for what's going on, or place blame on one another. Daily life is also simply more complicated, and unless your marriage is strong it can feel overwhelming at times.

If you think of the kid's needs first, divorce doesn't make much sense. But given the circumstances, some may want to run away from it all.

 

[DrMcNulty]

I haven't had time to read all of the thread, but I'm definitely subbing. My 2 1/2 year old son has many signs of being on the spectrum too. Still non-verbal (has good hearing), but he does attempt to say words when prompted. Occasionally doesn't respond to his name, but other times he does. It's weird. He's actually a very sweet and affectionate little boy. He always lights up when my wife and I come home from work. I typically get a big hug and kiss. He hates being alone. He frequently looks for his big brother or my wife and I and will usually grab my hand and take me somewhere to go play. But the funny thing is, it isn't all the time. Sometimes I really think he goes into his own little world (and it scares me). We also deal with frequent tantrums, and he is a poor sleeper.

My older son just turned 7 and started speaking late, too. He kind of had similar symptoms of being in his own little world, and occasionally not respond to his name either (I always thought he confused his name "Noah" with the word "no.") He's also been exposed to 2 languages (English and Bosnian) which are very, very different in structure. I thought that contributed to his speech delay, and I'm hoping it's the same thing with my younger son. When Noah was in preschool he was presumed to have autism by teachers, and my wife and I were so angry that we changed schools. When he was in kindergarten, I got a phone call from the office saying that Noah had a seizure. Ultimately, he was diagnosed with a form of absence epilepsy and he was started on Depakote. After that, he was like a brand new kid. It was crazy. Now he is excelling in school (top of his class), and is learning piano and skiing. He's also a minecraft nut.

In a way, I hope my younger son turns out the same way (minus the epilepsy, of course), but with him, he seems different, more legitimately autistic. My Bosnian mother-in-law lives with us and and stays with him during the day, but her English is only fair and she speaks with a heavy accent. So I don't know. We have him enrolled in the birth-to-three program, and our local OT and a representative from the school district are coming early March to do another evaluation. I'm also getting my son evaluated by Noah's neurologist to see if maybe it is epilepsy or some other nonsense. Nobody yet has said the A-word to us, but I think it's because my wife and I are in denial. I guess we'll just play it smart though. As long as we have the resources, we may as well use them. Sure as hell couldn't hurt him. I'll keep you posted.

 

[Tragicomedy]

I haven't had time to read all of the thread, but I'm definitely subbing. My 2 1/2 year old son has many signs of being on the spectrum too. Still non-verbal (has good hearing), but he does attempt to say words when prompted. Occasionally doesn't respond to his name, but other times he does. It's weird. He's actually a very sweet and affectionate little boy. He always lights up when my wife and I come home from work. I typically get a big hug and kiss. He hates being alone. He frequently looks for his big brother or my wife and I and will usually grab my hand and take me somewhere to go play. But the funny thing is, it isn't all the time. Sometimes I really think he goes into his own little world (and it scares me). We also deal with frequent tantrums, and he is a poor sleeper.

My older son just turned 7 and started speaking late, too. He kind of had similar symptoms of being in his own little world, and occasionally not respond to his name either (I always thought he confused his name "Noah" with the word "no.") He's also been exposed to 2 languages (English and Bosnian) which are very, very different in structure. I thought that contributed to his speech delay, and I'm hoping it's the same thing with my younger son. When Noah was in preschool he was presumed to have autism by teachers, and my wife and I were so angry that we changed schools. When he was in kindergarten, I got a phone call from the office saying that Noah had a seizure. Ultimately, he was diagnosed with a form of absence epilepsy and he was started on Depakote. After that, he was like a brand new kid. It was crazy. Now he is excelling in school (top of his class), and is learning piano and skiing. He's also a minecraft nut.

In a way, I hope my younger son turns out the same way (minus the epilepsy, of course), but with him, he seems different, more legitimately autistic. My Bosnian mother-in-law lives with us and and stays with him during the day, but her English is only fair and she speaks with a heavy accent. So I don't know. We have him enrolled in the birth-to-three program, and our local OT and a representative from the school district are coming early March to do another evaluation. I'm also getting my son evaluated by Noah's neurologist to see if maybe it is epilepsy or some other nonsense. Nobody yet has said the A-word to us, but I think it's because my wife and I are in denial. I guess we'll just play it smart though. As long as we have the resources, we may as well use them. Sure as hell couldn't hurt him. I'll keep you posted.

Best of wishes with the diagnosis. Most of us have recently crossed that road, so while our journeys may be different we might be sharing many of the same paths.

There's a lot of research out there that shows strong correlation between autism and epilepsy, particularly with what are considered microseizures. One very interesting train of research indicates that when your kid stares off into space and is unresponsive they may be experiencing an imperceptible microseizure which affects their brain. No firm links yet, but it's interesting stuff.

Note: I'm not even in the same wheelhouse as a trained neurologist, but I read every study I can get my hands on so just sharing a bit.

 

[HP_Wuvcraft]

Nobody yet has said the A-word to us, but I think it's because my wife and I are in denial. I guess we'll just play it smart though. As long as we have the resources, we may as well use them. Sure as hell couldn't hurt him. I'll keep you posted.

There's absolutely nothing to be feel ashamed of if he does have Autism. Nothing to be in denial about. It is selfish to prolong it just because you guys can't handle it.

 

[p_xavier]

I always had super sensitive skin. Even today I might bleed if I wear a neck shirt. This is also a sign of autism that might help you identify the root cause. Most parents usually don't check this but they should.

 

[deadlast]

I haven't had time to read all of the thread, but I'm definitely subbing. My 2 1/2 year old son has many signs of being on the spectrum too. Still non-verbal (has good hearing), but he does attempt to say words when prompted. Occasionally doesn't respond to his name, but other times he does. It's weird. He's actually a very sweet and affectionate little boy. He always lights up when my wife and I come home from work. I typically get a big hug and kiss. He hates being alone. He frequently looks for his big brother or my wife and I and will usually grab my hand and take me somewhere to go play. But the funny thing is, it isn't all the time. Sometimes I really think he goes into his own little world (and it scares me). We also deal with frequent tantrums, and he is a poor sleeper.

My older son just turned 7 and started speaking late, too. He kind of had similar symptoms of being in his own little world, and occasionally not respond to his name either (I always thought he confused his name "Noah" with the word "no.") He's also been exposed to 2 languages (English and Bosnian) which are very, very different in structure. I thought that contributed to his speech delay, and I'm hoping it's the same thing with my younger son. When Noah was in preschool he was presumed to have autism by teachers, and my wife and I were so angry that we changed schools. When he was in kindergarten, I got a phone call from the office saying that Noah had a seizure. Ultimately, he was diagnosed with a form of absence epilepsy and he was started on Depakote. After that, he was like a brand new kid. It was crazy. Now he is excelling in school (top of his class), and is learning piano and skiing. He's also a minecraft nut.

In a way, I hope my younger son turns out the same way (minus the epilepsy, of course), but with him, he seems different, more legitimately autistic. My Bosnian mother-in-law lives with us and and stays with him during the day, but her English is only fair and she speaks with a heavy accent. So I don't know. We have him enrolled in the birth-to-three program, and our local OT and a representative from the school district are coming early March to do another evaluation. I'm also getting my son evaluated by Noah's neurologist to see if maybe it is epilepsy or some other nonsense. Nobody yet has said the A-word to us, but I think it's because my wife and I are in denial. I guess we'll just play it smart though. As long as we have the resources, we may as well use them. Sure as hell couldn't hurt him. I'll keep you posted.

Good luck with the diagnoses. We were in a denial phase when our son's preschool teacher mention, in a round about way, that our son was autistic. What helped us was observing and documenting his behavior. Then we knew we had to get him tested.

Our oldest, which is about 5 1/2 now, has been exbitting some atypical behaviors. And since autism usually runs in the family, we are going to have him tested this Friday. I think he may have ADHD, but my wife is thinking autism.

The whole point of all this is, it is better to get your children tested so you know how to help them and to get them help as early as possible.

 

[deadlast]

I always had super sensitive skin. Even today I might bleed if I wear a neck shirt. This is also a sign of autism that might help you identify the root cause. Most parents usually don't check this but they should.

I'm sorry you have to deal with that. My son doesn't seem to have super sensitive skin, but he would get diaper rash very easily. He doesn't seem to realize when he hurts himself, which scares the shit out of me.

 

[Zeppeli]

I always had super sensitive skin. Even today I might bleed if I wear a neck shirt. This is also a sign of autism that might help you identify the root cause. Most parents usually don't check this but they should.

I'm sorry you have to deal with that. My son doesn't seem to have super sensitive skin, but he would get diaper rash very easily. He doesn't seem to realize when he hurts himself, which scares the shit out of me.

This explains why I get cuts/etc so easily.

I went undiagnosed until my adult life (so until recently), got diagnosed with Aspergers and I'm really not too in the know of the symptoms.

Good to know, I guess.

How old is your son, dead?

 

[unknownstranger]

I'm actually shocked there's a decent discussion on autism on GAF.

From what I know, I got diagnosed with Aspergers (a lesser form of autism) when I was 9, but my parents seemed to ignore what counselors suggested. The only different treatment I got compared to most kids was a little more counseling. I struggled heavily to make friends. I rarely ever had more than 3 at once. For the most part I was getting through things fine until I hit puberty. Then, after multiple times acting out, I got sent to a mental hospital and got diagnosed with depression. At this point I still had no idea I had or even knew what Aspergers was. I was put on depression meds and left a week later. The next month, I kept feeling more and more frustrated socially before acting out again and being sent to the mental hospital a second time. This time I also got diagnosed with anger issues and put on Respridol. I still had 0 idea what Aspergers was until a months later when seeing a counselor with my parents, and finally started to work on some things.

What I've learned is it's almost impossible for us to express ourselves with words. What helped me with counselors is puzzles. I can't remember the name of them, but the puzzles where you try to fit shapes into a picture is what helped me express my feelings without words. Get toys to help your kid interact how he's feeling.

 

[deadlast]

This explains why I get cuts/etc so easily.

I went undiagnosed until my adult life (so until recently), got diagnosed with Aspergers and I'm really not too in the know of the symptoms.

Good to know, I guess.

How old is your son, dead?

I have 3 boys. My middle child was diagnosed with autism a month before he turned 3. He is a little over 3 years and 8 months now. And he is fuckin awesome. He has a ton of soft skills and his language is growing by leaps and bounds.

What was the process for you realizing you needed to get tested? I'm pretty sure my wife is aspie but she doesn't see the point in getting tested.

 

[Zeppeli]

I have 3 boys. My middle child was diagnosed with autism a month before he turned 3. He is a little over 3 years and 8 months now. And he is fuckin awesome. He has a ton of soft skills and his language is growing by leaps and bounds.

What was the process for you realizing you needed to get tested? I'm pretty sure my wife is aspie but she doesn't see the point in getting tested.

Good to hear they're doing well.

I was put in for testing after my psychiatrist was damn sure I had it. I had been seeing him for depression and anxiety issues, but he made a lot of connections with my father's side of the family (my Grandfather had diagnosed Aspergers and my dad definitely has it but refuses to acknowledge it). As far as I know, my older brother is not an aspie.

 

[DrMcNulty]

There's absolutely nothing to be feel ashamed of if he does have Autism. Nothing to be in denial about. It is selfish to prolong it just because you guys can't handle it.

We're not prolonging it. And we're not ashamed. He's been in speech therapy for over 6 months. OT is going to start soon. We're looking into early childhood education. He's getting the appropriate therapy. We just don't have a formal diagnosis. We also need to rule out epilepsy (as stated in my original post) given my older son's history. I'm not embarrased or ashamed at all, but this is a life changing diagnosis and some form of denial is a normal coping mechanism.

 

[Tragicomedy]

We're not prolonging it. And we're not ashamed. He's been in speech therapy for over 6 months. OT is going to start soon. We're looking into early childhood education. He's getting the appropriate therapy. We just don't have a formal diagnosis. We also need to rule out epilepsy (as stated in my original post) given my older son's history. I'm not embarrased or ashamed at all, but this is a life changing diagnosis and some form of denial is a normal coping mechanism.

Spot on. I went through a bout of depression and my wife went full denial mode at first. Luckily, after a few days we both got over it and stated taking care of business.

Good on both of you for caring so much for your boys.

 

[KillGore]

Reading OPs post makes me wonder if I'm autistic. This is almost exactly as I was when I was a baby, or so my parents told me. Is there a way to actually know? especially after being an adult? Can my slight social phobia be attributed to autism?

 

[The One Who Knocks]

Reading OPs post makes me wonder if I'm autistic. This is almost exactly as I was when I was a baby, or so my parents told me. Is there a way to actually know? especially after being an adult? Can my slight social phobia be attributed to autism?

There is no way 'to know' really. You could try take some of the various tests online to see if there's some indication that you may be autistic but ultimately you will need to see a professional rather than rely upon self-diagnosis so that you may be assessed by somebody more knowledgeable in the field to try and definitively say. I must confess I am unaware as to the diagnosis procedure for an adult, nor am I aware of services which may be in place to assist you.

The Autism Quotient Test found here was performed within my assessment and while you should certainly use hesistance in making a conclusion from it, it may be an indication as to whether you should seek further assistance in the matter. As for your social phobia, it could, potentially, be linked to autism, but it could, similarly, simply be as a result of anxiety. Without a rather broad, detailed analysis of your history, behaviour, and thought process no definitive conclusion could really be made.

 

[kick51]

A friend of mine was diagnosed...it feels like i'm in the ending to Usual Suspects, in a way. I don't want to attribute everything to that, but so many things make sense now.

I'm not sure if I'm glad to find out after knowing her for years (because I know I won't treat her differently and am still myself in our interactions) or if I would've liked to know right away (might've treated her differently.)

 

[TheAbsolution]

I have Aspergers myself and I was diagnosed at age 13(19 now) and it's funny, my best friend from before I was diagnosed also has it as well. It's funny how many things make sense now and I sorta cringe thinking back on some of the stuff that she and I have done. I feel for some of you here that have children in the spectrum because I know that as far as school went, I was fine but socially there were so many things that I wished I had done differently and also I know that my mom worried all the time about my wellbeing at school. I'm glad theres a small community here and I'd be happy to discuss things about my condition and how it has affected me here. I'm glad that there is a helpful place to discuss this on GAF.

 

[Captain Tuttle]

We're not prolonging it. And we're not ashamed. He's been in speech therapy for over 6 months. OT is going to start soon. We're looking into early childhood education. He's getting the appropriate therapy. We just don't have a formal diagnosis. We also need to rule out epilepsy (as stated in my original post) given my older son's history. I'm not embarrased or ashamed at all, but this is a life changing diagnosis and some form of denial is a normal coping mechanism.

Very good post, especially the bolded. Whenever we get a new therapist I always talk to them about how it felt when we first got the diagnosis. It was pretty devastating for us. I tell them to take into account the parents and how they may feel, we had no help really.

Time has passed and my son is amazing, a great kid and I wouldn't change that for the world. But man, when you get that diagnosis your head starts to swim.

At least that was our experience.

 

[deadlast]

. I'm not embarrased or ashamed at all, but this is a life changing diagnosis and some form of denial is a normal coping mechanism.

Making this thread helped me cope with the pre-diagnoses phase.
When we got the official diagnoses, we were happy. We finally knew what we were dealing with. It's been a journey so far.

 

[DrMcNulty]

That is also why I'm here. I really think parents need a support system in these situations. Thanks for creating the thread. This has all been very helpful so far.

 

[Mistel]

I'm sorry you have to deal with that. My son doesn't seem to have super sensitive skin, but he would get diaper rash very easily. He doesn't seem to realize when he hurts himself, which scares the shit out of me.

I also seem to have a ineffective pain tolerance,
My feet are an issue I can't tell when I've hit something with them they are all battered and bruised with faint scars.

 

[deadlast]

That is also why I'm here. I really think parents need a support system in these situations. Thanks for creating the thread. This has all been very helpful so far.

I was shocked to not see one before I started this. GAF seems to have a tread for everything.

Thank you all again for sharing.

 

[Colin.]

.

 

[deadlast]

Took my oldest son for an eval today and this is what he said.

I think he has features of ADHD but I would prefer not to apply a diagnosis at this point without seeing how he progresses. It'll probably become more clear (if he has the diagnosis) in the next year or so.

And he also said this

I'm concerned that a language processing or mixed receptive expressive language disorder is playing a role in difficult behaviors - that is, he may not process what you are saying to him the way you would expect, and he may have difficulty finding the words to express himself.

So basically he either has ADHD or doesn't. We will be getting further testing to find out more.

 

[HP_Wuvcraft]

Ah, ADHD. The old nemesis of an Autie diagnosis. Yeah, ADHD oft gets misread as Autism.

 

[deadlast]

Ah, ADHD. The old nemesis of an Autie diagnosis. Yeah, ADHD oft gets misread as Autism.

Which is why the doctors want to do a full autism test for my oldest son. They want to rule out as much as possible

 

[GhaleonEB]

Well, we finished all the testing and the folks in the school did their evaluations and observations. Our daughter is squarely in the high functioning autism spectrum. In many ways she's an usual type, very challenging. We decided at the meeting she qualifies for some help from the school, and we have a follow up meeting soon to develop a plan.

Right now we're working on how to talk with her about it. The biggest challenge will be getting her to engage and participate. She totally shuts down if she is even slightly anxious, and she's often quite anxious. Right now she's hidden in a large cardboard box under her sister's bed because I asked about her school progress report. Been there half an hour. Yeah. This will be fun.

I'm hopeful now that we know - or at least better understand - what we're dealing with. But it's going to be rough seas ahead soon. Thanks for the advice from a few months back. I'll probably be in here asking for help now and then.

 

[deadlast]

Well, we finished all the testing and the folks in the school did their evaluations and observations. Our daughter is squarely in the high functioning autism spectrum. In many ways she's an usual type, very challenging. We decided at the meeting she qualifies for some help from the school, and we have a follow up meeting soon to develop a plan.

Right now we're working on how to talk with her about it. The biggest challenge will be getting her to engage and participate. She totally shuts down if she is even slightly anxious, and she's often quite anxious. Right now she's hidden in a large cardboard box under her sister's bed because I asked about her school progress report. Been there half an hour. Yeah. This will be fun.

I'm hopeful now that we know - or at least better understand - what we're dealing with. But it's going to be rough seas ahead soon. Thanks for the advice from a few months back. I'll probably be in here asking for help now and then.

It's very good that she is going to be getting help. The ride is crazy but every milestone they hit is amazing.

Good luck and keep us posted.

 

[Mistel]

The biggest challenge will be getting her to engage and participate. She totally shuts down if she is even slightly anxious, and she's often quite anxious. Right now she's hidden in a large cardboard box under her sister's bed because I asked about her school progress report. Been there half an hour. Yeah. This will be fun.

I remember being like that. My stubbornness along with completely being able to shut down was a thing that I've never grown out of.

But it's has got better and worse as time goes, I only have a complete shut down rarely. But when I do you'd have better luck getting blood from a stone.

 

[The One Who Knocks]

Well, we finished all the testing and the folks in the school did their evaluations and observations. Our daughter is squarely in the high functioning autism spectrum. In many ways she's an usual type, very challenging. We decided at the meeting she qualifies for some help from the school, and we have a follow up meeting soon to develop a plan.

Right now we're working on how to talk with her about it. The biggest challenge will be getting her to engage and participate. She totally shuts down if she is even slightly anxious, and she's often quite anxious. Right now she's hidden in a large cardboard box under her sister's bed because I asked about her school progress report. Been there half an hour. Yeah. This will be fun.

I'm hopeful now that we know - or at least better understand - what we're dealing with. But it's going to be rough seas ahead soon. Thanks for the advice from a few months back. I'll probably be in here asking for help now and then.

Sorry to potentially be rude but is the first bolded a common situation? I ask only because while my school had suggested it via observation, a diagnosis (technically it was my second but that's rather irrelevant) had to be done outside of it and I'm curious as to whether or not diagnosis within the school setting is the more typical occurence.

With regards to how to speak to her, I would personally prefer a more direct route as opposed to any form of gradual implication; try to inquire as to what she is aware of about autism first, what she knows about the evaluation process she had been through, and, following these inquiries, respond to her preconceptions, clarifying anything that hasn't been mentioned, emphasizing that challenges it may bring can be overcome, improvement can be made in areas of difficulty, and certain positive aspects may come with it (I'd also try and emphasize the idea that it exists on the spectrum so that she is still her own person and isn't necessarily the exact same as somebody else who has a similar diagnosis). I don't suggest commenting it's 'normal' personally; I'd imagine she'll see through that and recognise that it is not 'normal' but something different from the normality (which doesn't imply that it's bad so if you're going with this route I'd suggest commenting on its acceptability as opposed to it's normality). Finally, I would absolutely emphasize that while she may be autistic, it is very important that this is not viewed as an excuse, that society won't ultimately bend to accomodate all potential decifits and she must still try and overcome barriers the condition provides (I'm unsure if I've phrased this well and if I've adequately projected my thoughts on the matter; if not, I'm trying to suggest that it must be affirmed that she shouldn't blame all areas of difficulty upont he diagnosis but must try and overcome them rather than 'give up'). I am unsure if your daughter would respond positively to the rather blunt approach suggested above, I'm sure you know your daughter far better than I do, and would be more aware of how to approach the situation, but I hope it provides some suggestions as to where you may take the conversation. I feel it's very important that some improvement is made while the individual is young so I wish your wife, your daughter, and yourself, the best in the situation as I imagine it is rather vexed at the moment.

EDIT: Reading back over this I'm not really happy with the phrasing and I don't feel I've captured the nuance of what I'm trying to convey so I hope it's more understandable than I found it after I posted and read it for the third time following the post's completion.

 

[deadlast]

Melatonin, who uses it?

This stuff helps my little guy fall asleep.

 

[Captain Tuttle]

Melatonin, who uses it?

This stuff helps my little guy fall asleep.

We don't but a friend uses it on his autistic son and he had good results, stuff works for him

 

[Tragicomedy]

We're blessed in the sense that sleep has never been an issue.

One of the boys at my son's therapy doesn't sleep for more than three hours a night, which you can imagine is hell on the family. Their OT person recommended they overload him with more sensory stuff during the day (think riding in a spinning tea cup). It worked magic and he now sleeps through the night.

:edit: OT not Oz. Autocorrect.

 

[deadlast]

We're blessed in the sense that sleep had never been an issue.

One of the boys at my son's therapy doesn't sleep for more than three hours a night, which you can imagine is hell on the family. Their Oz person recommended they overload him with more sensory stuff during the day (think riding in a spinning tea cup). It worked magic and he now sleeps through the night.

Our son has a weighted blanket for night sensory needs. Also, he sometimes needs bear hugs and excessive amount of tickling.

 

[Mumei]

This damn article, making me tear up at work.

 

[deadlast]

This damn article, making me tear up at work.

Yeah that thing was a tear jerker.

Positive thing just occurred. Maryland just passed autism insurance reform.

 

[Tragicomedy]

This damn article, making me tear up at work.

That was a great read. Owen's insight into the sidekicks and the possibility of being left behind is so moving.

We didn't experience regressive autism in our case, but it sounds almost more difficult to deal with than just realizing something is off from the get-go. Our son was never physically delayed (quite the opposite), but he certainly didn't show early social developmental queues that others his age did. We were brand new parents and didn't realize any better until he was ~2, when some of the differences were more pronounced.

The idea of having your kid show all sorts of typically social behaviors, normal speech, normal movement and the like...and then it all just slips away. Wow.

I know a lot of time and money is going into autism research, particularly focused on finding a likely cause. I'm sure smarter people than me are already on the ball, but I would think they'd want to pay special attention to the regressive side of ASD. What makes a seemingly completely normal child suddenly go into their own inner shell?

 

[aett]

A new situation just popped up. My three-year-old will only eats a few things and has them on a daily basis. French toast with a little bit of butter for breakfast, peanut butter sandwich for lunch, blueberry muffin for dinner, and a banana with breakfast and lunch. Once in a while he asks for chocolate - we make him eat most/all of his meal and then give him one or two Hershey's little rectangle pieces (not much bigger than my thumb).

This has always been a source of concern for us, so we did a couple of sessions of feeding therapy. Everything they suggested (apart from offering him some of our food during meals, which we do, with no luck) was impossible for us to do. I don't want to explain the whole thing, but it basically would have taken up more time and money than we have, especially since my wife and I both work full-time and have fairly long commutes. (It makes my wife feel even more awful about not being able to be a stay-at-home mom.)

Anyway, the current problem: a new kid with a peanut allergy is starting at my son's special ed preschool class tomorrow, so my son can't have his peanut butter sandwich for lunch anymore. He can't just change up his meals, either: the school won't heat up anything (like his french toast), and he brings one of his "dinner" muffins as a snack already. We don't know what he's going to eat.

 

[GhaleonEB]

Sorry to potentially be rude but is the first bolded a common situation? I ask only because while my school had suggested it via observation, a diagnosis (technically it was my second but that's rather irrelevant) had to be done outside of it and I'm curious as to whether or not diagnosis within the school setting is the more typical occurence.

Well, this was prompted by observations from her teachers and my wife and I in a conference, in the context of her struggling at some aspects of school. (Social interactions, organization skills, etc.) The school has resources and people dedicated to helping autistic children, and there is a process to see if she qualified. That process was questionnaires to be completed by teachers, parents and the specialists, and direct observation/interaction/testing on our daughter.

It's technically not a medical diagnosis, which we would need to get outside of the school; we're told much of the work we did was standardized in the state and we should be able to leverage some of it. (I'm skeptical) We will probably go that route a ways down the road so as to not throw too much at her at once.

With regards to how to speak to her, I would personally prefer a more direct route as opposed to any form of gradual implication; try to inquire as to what she is aware of about autism first, what she knows about the evaluation process she had been through, and, following these inquiries, respond to her preconceptions, clarifying anything that hasn't been mentioned, emphasizing that challenges it may bring can be overcome, improvement can be made in areas of difficulty, and certain positive aspects may come with it (I'd also try and emphasize the idea that it exists on the spectrum so that she is still her own person and isn't necessarily the exact same as somebody else who has a similar diagnosis). I don't suggest commenting it's 'normal' personally; I'd imagine she'll see through that and recognise that it is not 'normal' but something different from the normality (which doesn't imply that it's bad so if you're going with this route I'd suggest commenting on its acceptability as opposed to it's normality). Finally, I would absolutely emphasize that while she may be autistic, it is very important that this is not viewed as an excuse, that society won't ultimately bend to accomodate all potential decifits and she must still try and overcome barriers the condition provides (I'm unsure if I've phrased this well and if I've adequately projected my thoughts on the matter; if not, I'm trying to suggest that it must be affirmed that she shouldn't blame all areas of difficulty upont he diagnosis but must try and overcome them rather than 'give up'). I am unsure if your daughter would respond positively to the rather blunt approach suggested above, I'm sure you know your daughter far better than I do, and would be more aware of how to approach the situation, but I hope it provides some suggestions as to where you may take the conversation. I feel it's very important that some improvement is made while the individual is young so I wish your wife, your daughter, and yourself, the best in the situation as I imagine it is rather vexed at the moment.

EDIT: Reading back over this I'm not really happy with the phrasing and I don't feel I've captured the nuance of what I'm trying to convey so I hope it's more understandable than I found it after I posted and read it for the third time following the post's completion.

We kept the discussions high-level and conceptual right until we had the information back and the universal agreement about how she fell, and since then we've been talking to her about autism specifically. It's a lot to wrap her head around and she's resistant to doing anything at all, but we're moving forward in baby steps. She starts a 30 minutes a week program in a few weeks, while we keep talking with her about it. Still early going but I'm optimistic.

 

[deadlast]

A new situation just popped up. My three-year-old will only eats a few things and has them on a daily basis. French toast with a little bit of butter for breakfast, peanut butter sandwich for lunch, blueberry muffin for dinner, and a banana with breakfast and lunch...

Anyway, the current problem: a new kid with a peanut allergy is starting at my son's special ed preschool class tomorrow, so my son can't have his peanut butter sandwich for lunch anymore. He can't just change up his meals, either: the school won't heat up anything (like his french toast), and he brings one of his "dinner" muffins as a snack already. We don't know what he's going to eat.

As long as he gets vitamins, then he can pretty much eat a limited diet.

As for the new issue, I have 2 suggestions. Have you tried Nutella? Also, can he eat his lunch earlier.

 

[deadlast]

So my son has been biting chunks of foam off of the foam guards on our trampoline.

I'm not sure why he is doing this. He knows it's wrong. Does he need a chew thing?

 

[Tragicomedy]

So my son has been biting chunks of foam off of the foam guards on our trampoline.

I'm not sure why he is doing this. He knows it's wrong. Does he need a chew thing?

Strangely enough, our OT lady says that a lot of kids on the spectrum DO feel the need to chew on stuff fairly frequently. That sounds pretty common. Our son started chewing his sleeves and collars on his shirts, but fortunately we broke that habit. I can sometimes hear him grinding his teeth, so that was more of a trade off than anything.

We don't have a chew toy, but he'll sometimes clamp down on the rubber straw that is built into his cup. We try to let him get it out of his system that way.

 

[FutureZombie]

The school I work at has a special autism program. Of the 400 students in the building, 80 of them have autism. Interestingly, out of the 80 students with autism, only 5 are girls.

I'm a special ed teacher and in my class of 11 students, 9 of them have autism. It's a very interesting class. About half of the students are in the average range of intelligence, but of course have the language disability and struggle with reading and listening comprehension. The other half of the class is much lower intellectually (IQs in the low 70s). This means I'm preparing lessons that are at two different levels. We try to work in small groups as much as possible because it's very, very difficult to keep the attention of a full group of students and the material is never going to be at the right level for all of them.

The biggest challenge is reading comprehension and math problems that involve reading comprehension and multiple steps. Let me tell you, Common Core is not autism friendly. For example, there is a student in the class who has memorized his multiplication facts and actually writes the multiplication table for fun. But when a math problem involves words, he gets completely confused. So on the one hand, he is great with numbers, but on the other hand, he can't understand what the question is asking.

There are also a number of students with significant behavior issues in the class. I've been using social stories, point sheets (behavior contracts), movement breaks, and snack rewards to help with all that. One thing that's for sure is that what works for one kid does not necessarily work with the next student.

If any of you parents have questions for a special educator, I'd love to help out. Anything I don't know, I will ask my colleagues and our school psychologist about. I also have a friend who is a behavior specialist.

 

[Mistel]

The school I work at has a special autism program. Of the 400 students in the building, 80 of them have autism. Interestingly, out of the 80 students with autism, only 5 are girls.

The gender ratio for autism is this:

Boys are affected with ASDs more frequently
than are girls with an average male-to-female
ratio of 4.3:1 (48). The sex ratio is modified
substantially by cognitive impairment; among
cases without mental retardation the sex ratio
may be more than 5.5:1, whereas among those
with mental retardation the sex ratio may be
closer to 2:1 (48)

According to this. I don't actually know any other girls with autism I think.

 

[Tragicomedy]

The gender ratio for autism is this:

According to this. I don't actually know any other girls with autism I think.

I've seen one at my son's ABA session, along with nine other boys. It's one of those great mysteries.

I think the fragile X cause offered some explanation since boys only get one X chromosome. If it is genetically mutated in any way, that would make boys way more susceptible than girls who have a second X chromosome to potentially balance things out. And yet current research says that fragile X syndrome only accounts for a tiny percentage of all autism cases. That would lead me to believe that genetically the Y chromosome would be the likelier candidate here, but the bottom line is doctors and researchers just don't know.

If you look at only boys, we're nearing a 2% rate (1 in 54) of autism in the newborn and toddler population. That's...staggering.

 

[The One Who Knocks]

Well, this was prompted by observations from her teachers and my wife and I in a conference, in the context of her struggling at some aspects of school. (Social interactions, organization skills, etc.) The school has resources and people dedicated to helping autistic children, and there is a process to see if she qualified. That process was questionnaires to be completed by teachers, parents and the specialists, and direct observation/interaction/testing on our daughter.

It's technically not a medical diagnosis, which we would need to get outside of the school; we're told much of the work we did was standardized in the state and we should be able to leverage some of it. (I'm skeptical) We will probably go that route a ways down the road so as to not throw too much at her at once.

We kept the discussions high-level and conceptual right until we had the information back and the universal agreement about how she fell, and since then we've been talking to her about autism specifically. It's a lot to wrap her head around and she's resistant to doing anything at all, but we're moving forward in baby steps. She starts a 30 minutes a week program in a few weeks, while we keep talking with her about it. Still early going but I'm optimistic.

Oh I see. Well, considering the school has resources available, and whether or not these qualifications are met is the most important aspect (at the present time), I would think you're taking the right approach. The primary importance is definitely mitigating (or improving) current areas of deficiency ("Social interactions, organization skills, etc." and, given your prior posts, social issues seem to be the primary areas which is good in some ways considering academically she's in a strong position) and you are certainly taking the correct step, even if it is 'baby steps', encouraging participation in treatment as opposed to seeking a medical diagnosis followed by seeking treatment, a process which could take a considerable length of time (I imagine there'd be some financial cost too) and, ultimately, probably wouldn't bring much more than the current situation, or, alternatively, doing both at once and completely overwhelmin her.

The support network in the school will definitely be a sizeable benefit even if she's resistant as of right now. I do think you should certainly continue encouraging her to use the facilities despite her hesitance as it can only have a positive effect; if there is no benefit, it was only time lost, if there are benefits, it'll be extremely valuable for years to come in pretty much all aspects of life, particularly any related to social interaction. Hopefully, as she processes the information (or engages with the thirty minute classes) the resistance will diminish and she'll be much more willing to actively partake in whatever assistance can be provided; the best situation is probably the stubborness in resisting the new experiences making way for either curiosity in the programmes/help or recognition that they will have a net-positive outcome for her. Considering she's doing so well in numerous subjects, if the time is taken out of elsewhere within the school day (as I imagine it is) it shouldn't be an issue as I would think that she would easily be able to catch up anything that may have been missed in class.

I certainly can't find any area to criticise your approach, you and your spouse certainly seem to be handling everything in a very mature, well-considered manner, and I too would be optimistic that it will pay off (particularly considering she's quite young).