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Autism - Welcome to the Spectrum

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I'm a behavioral therapist for kids on the spectrum (ABA) and it has be quite the fascinating experience to see just how broad the spectrum is. Its amazing how every child i see on the spectrum is different, regardless of their level of functioning. It makes for some very exciting and challenging work days.

I will say this to the OP, the earlier you're able to get your child diagnosed, the much quicker you're able to start with any interventions that can help. I believe the laws are changing to allow insurance coverage for ABA/behavioral therapies (at least in my state it is, which is having a huge impact on our services, for better and worse), so that is something you can look into.
 

Viewt

Member
I'm gonna need that App. My son has needs help with his communications. anything I can do to level up his communication skills, I will do.

Sure thing. It's called The Communicating Basic Needs App (or ComApp.3 for short, being in its third, current version). You can find it on Google Play and the App Store.

If you're interested, we're actually going be having huge discounts on everything in our store for April, since it's Autism Awareness Month. Everything's going to be at least 50% off, a lot of it more than 60%. We also make flash cards, e-books, socialization stories and webinars from board-certified behavioral analysts. You can find the store here.
 

deadlast

Member
Sure thing. It's called The Communicating Basic Needs App (or ComApp.3 for short, being in its third, current version). You can find it on Google Play and the App Store.

If you're interested, we're actually going be having huge discounts on everything in our store for April, since it's Autism Awareness Month. Everything's going to be at least 50% off, a lot of it more than 60%. We also make flash cards, e-books, socialization stories and webinars from board-certified behavioral analysts. You can find the store here.

Thanks man. The app is incompatible with my phone, but I will get it on the wife's iPad.
 
This one of the reasons were are trying to get him diagnoses ASAP. We want him in as many programs as possible, so he can get all of the help he needs. We have also been working on not using language that he might misunderstand, like sarcasm, and making sure we don't get frustrated with him.


I've been told by multiple people that speech therapy helps tremendously. I have even seen it help my son.

He doesn't need a diagnosis to get into the public school preschool programs. We do evaluations to determine if students have a need for specialized instruction (ie. preacademics, motor skills, social skills, communication, etc.).
 
As an Autistic Self sufficient adult, I was like your son growing up. I saw little personal value in group play, responding to my name, and touching as signs of affection.

Your son loves you and be there for him. Never question his tears and anger, maybe it is his way of him being wronged by someone.

Avoid ABA therapies unless you and/or your spouse is around him. Having a parent ensures a loving relationship with family.

Learn to accept him for who he is, and never let him feel inadequate compared to other people.

Read about the Autism Rights Movement on what your son can aspire to be.

Love him and he does know it.

I am an Applied Behavior Analyst, although I took the route of Organizational Behavior Management. I am very interested in what you mean by the boded statement. It's always great to hear from an insider. I worked for 2 summers in ABA for Low Functioning Autistic children and realized I didn't have the heart or strength to do that for a living, it's very hard work.
 

Bigfoot

Member
My nephew did the same thing growing up, stacking large Lego blocks until they came tumbling down. Didn't realize what it meant until later.
I think a lot of kids do that. My 2 year old son does it all the time, but I'm pretty sure he isn't autistic. He has no problems showing emotion, talks well above a 2 year old level, and looks people in the eyes. He is a bit shy around other people/kids at first, and does parallel play a lot, but that is very common in 2 year olds. He also loves Thomas the Train.

Just saying that because your kid may show 1 or 2 signs of autism, it may not mean that they have autism.
 

deadlast

Member
Hey guys, should I put my son in sports? If so, which one?

Also, what about music classes and other art classes. Are those venues positive?
 

deadlast

Member
Woot! Got my son into an NIH study. Free Diagnoses and Consultation. We have to wait till June, but that is sooner than any of the other institutes in our area. I'll keep you guys posted.
 

deadlast

Member
Update. My son is on the spectrum, as we expected. He has a sever language deficit. But he has been making progress. I'll post more later about that.

Potty training is not working out. He just turned 3, so he should be able to potty train.

I'm looking to possible move to Charlotte NC. Anyone have experience dealing Autism programs there?
 

dark10x

Digital Foundry pixel pusher
Interestingly, a good friend of ours had their child diagnosed autistic and he showed most of the same signs you mentioned above. It was quite sad to experience as we had a little one ourselves who did not fall into those making get-togethers a bit difficult for them.

However, just in the last three months, he has completely turned a corner. It was really out of the blue. He still exhibits some of the typical problems but they have become so much less pronounced. Just three months ago he barely said a word, constantly became angry, was totally anti-social, etc. Now? He's talking up a storm and using language so far beyond where he was just three months ago. His parents could not be more overjoyed with how he is progressing. It's clear that he still has some signs of autism, no doubt, but he's made tremendous progress in the opposite direction.

He's now 3 and a half. At age 3, he was like a completely different child. Just keep up the hope. That's all I'm saying. :)

Of course, we have our own difficulties with our son. He has a peanut allergy. This is a terrifying thing for us and something that seems to be more and more common these days. I'm always worried about something happening to him but at least we try to stay prepared. As a parent, nothing is more painful than seeing your child suffer in some way or worrying about them.
 
I feel you OP, my brother (14) got diagnosed with Asperger's a few years back. Obviously we wish we'd picked up on it earlier, as he's gone through about 3 years of high school getting bullied because of the way he speaks (he appears to have an American-type accent, we live in the UK). It's difficult at times, but overall pretty fine. He has a real thing about my Dad for some reason, grunts whenever he talks to him really, won't sit on any chair my dad's sat on.

Had his first funeral (my grandmother's) a few days back though, and he looked pretty uncomfortable being around everybody crying, and of course he didn't see the need to cry. Which is fine, when she passed he said "Well at least she's at peace now". Logical, perfectly fine way of processing it really.
 

bengraven

Member
One of the local theaters is doing an autism movie club for kids!

Basically they'll show a recent release, but they turn the volume down a pitch and the lights up and it's perfectly okay for kids to get out of their seats.

Update. My son is on the spectrum, as we expected. He has a sever language deficit. But he has been making progress. I'll post more later about that.

Potty training is not working out. He just turned 3, so he should be able to potty train.

I'm looking to possible move to Charlotte NC. Anyone have experience dealing Autism programs there?

My son has autism as well (Aspergers, but as you know that's folded in now). We couldn't get him potty trained until he was nearly 5. One day we just forced him to go to bed without a diaper and he had an accident. The next night he didn't. He didn't want to poop his pants.
 

orion434

Member
Just out of curiosity I see many people say their "son" does anyone have a daughter diagnosed with Autism? I know 3 children described by parents as "being on the spectrum" and all of them are boys?
 

GothPunk

Member
Just out of curiosity I see many people say their "son" does anyone have a daughter diagnosed with Autism? I know 3 children described by parents as "being on the spectrum" and all of them are boys?
Well there is a sex bias to autism, with a ratio of 4.3:1 in favour of boys, so it's just more rare to see a girl with autism.
 

orion434

Member
Well there is a sex bias to autism, with a ratio of 4.3:1 in favour of boys, so it's just more rare to see a girl with autism.

Is there any reasoning behind this sex bias?

My parents swear that if Autism existed in the 70's I would have been diagnosed.
 
Is there any reasoning behind this sex bias?

My parents swear that if Autism existed in the 70's I would have been diagnosed.

Autism is missed in females often due to people not interpreting the signs correctly or as the previous poster said, it not being attributed to or monitored in females in general. It would seem severe cases are usually caught though.

Rett Syndrome which has been compared to Autism happens to occur much more frequently among females though.
 

GothPunk

Member
Is there any reasoning behind this sex bias?
Rett Syndrome which has been compared to Autism happens to occur much more frequently among females though.
Well when you see a distinct sex bias like that, it's usually due to genetic reasons. Rett syndrome is a great example here because the genetic changes that cause it are located on the X chromosome, which means that occurrence in females is highly more likely. However in general, autism appears in males more than females.

I should point out here that I work in the field of autism genetics, so I am happy to lend that perspective, but it is not my intention to derail the thread into such discussion. It's important for parents to be able to come together and support each other.
 
Our only child was diagnosed with ASD this past April. He turns 3 in August. We immediately began ABA, OT, and speech therapies. ABA in particular has been like magic for him. He's slowly able to relate his needs better, seems to be more in the moment, and genuinely enjoys the challenge of solving puzzles.

According to his therapist, he's high functioning. He had no delays in standing, crawling, walking, or talking. He is particularly advanced in letters (spelling and reading) and numbers (counting). At the age of 18 months he could count to twenty in English and Spanish, and could identify every letter in the alphabet.

We were always amazed at his intelligence, but failed to notice his lack of social development. We always considered him shy and just thought he needed more opportunities to play with other kids. After getting him into play groups, we noticed he doesn't really pay any attention to other kids and prefers to do his own thing.

In terms of symptoms that he displays, he does show signs of stemming when he gets overly excited, jumping up and down and sometimes flapping his wrists. He does enjoy organizing, categorizing, and lining up his toys. He struggles with eye contact, even when he is clearly listening to what we tell him. He does struggle some with change, but we've noticed that by preparing him with clear countdowns ("Five more minutes and then we have to go") have helped him a ton. Probably the most noticeable outward sign is he constantly likes to talk, hum, sing, or recite words from books or songs he really likes.

This school year we're enrolling him into an intervention preschool which is 50/50 special needs and normally developing. We'll continue with his ABA, OT, and speech as well. Our hope is that by age 5,we can mainline him into school. He is such a great kid overall, and as frustrating as things can be at times, we will never stop loving and caring for him.
 

speedline

Banned
I have a 12 year old son who has autism. He was probably 7 or so before he began to speak in a sentence structure that you can actually understand. Before he could speak he would just make gestures and grunts, hand flapping, crying, ect. He did not make eye contact for the first several years

He is still very very picky about what food he will eat and what he will not eat. I don't think we were able to get him to even try birthday cake until 7 or 8 years old. It is all to do with texture with him, we would literally put out a buffet of food when his was little and he wouldn't touch it. He didn't really start enjoying Christmas presents until he was at least 5, then one day it clicked with him that he would get new toys and started having fun. Things that you take for granted that kids would enjoy, he often found them to be not enjoyable or uninteresting.

He was extremely obsessed with a dvd by leapfrog that taught letters and sounds. He may have watched that video over and over a thousand times and loved it so much he began reading in phonics very early. He is still obsessed with movies and dvds now, also with television schedules. He knows the names of a ton of directors and studios and likes to youtube opening sequences for various studios. The Scott Free productions opening with the bird flying is his favorite and he still gets extremely excited when he sees it today.

There are lots of challenges with raising a child with Autism and I'm sure every parent with some years of experience could write an entire book on the subject of what works and what doesn't, every child is different. He still can not tie his shoes, so he wears Z Straps made by Sketchers. As long as he can get his shoes on in some way, it's progress imo. Everything is progress, no matter how small or seemingly insignificant.

Like I said he is 12 now and has made tremendous improvement over the years. He can speak in sentences, but it's still not like holding a conversation with a typical person. He still flaps his hands, makes weird sounds, gets obsessed with one subject and talks about that subject over and over. Lots of repeating the same phrases over and over util you change his focus or he just lets it go for a time.

He is an awesome kid though and we embrace Autism in our home. He may never be able to take care of himself independently, but thats ok. There is no timeline that we make him meet to learn new things, we just keep trying. If he is 30 years old before he can tie his shoes then so be it. He is overall a very happy and kind person and thats all I could ever really want in a son.
 
He may never be able to take care of himself independently, but thats ok. There is no timeline that we make him meet to learn new things, we just keep trying. If he is 30 years old before he can tie his shoes then so be it. He is overall a very happy and kind person and thats all I could ever really want in a son.

That's exactly how we feel about our guy. Before his diagnosis, I became worried about a few areas where he was lagging behind his peers. Now, we put everything on a personal scale just for him. We're measuring his progress based on where he was three months ago and where he is now.

I'm really proud of my boy and maintain high hopes for his future. If he ends up living his adult life at home with us, that's fine. Ultimately, we want to make sure he always feels loved and accepted for who he is.
 

aett

Member
Update. My son is on the spectrum, as we expected. He has a sever language deficit. But he has been making progress. I'll post more later about that.

Potty training is not working out. He just turned 3, so he should be able to potty train.

I'm looking to possible move to Charlotte NC. Anyone have experience dealing Autism programs there?

Likewise, my son (now two and a half) was diagnosed as being on the spectrum and has been going to speech therapy and occupational therapy for a couple of months now. He's made a ton of progress and he says a lot of words, but barely puts any of them together. Sometimes he will randomly repeat something after hearing it once and it becomes part of his vocabulary, but that rarely happens.

I think he'll be starting Applied Behavioral Analysis before long. At first this will be about two hours a day, 2-3 days per week, at home (mostly likely at his grandparents' home since my wife and I will be at work for most of the appointments). Around the time he turns three he may end up going to the ABA center for all-day sessions, five days a week. That'll be nice because he'll get tons of support on a (week)daily basis and the cost is covered by the state, so we won't have to pay for daycare.

Sorry, I live in California so I can't help you with anything in NC. Good luck, though - there are some really tough parts but it's really amazing to see your kid progress and improve over time.
 

efyu_lemonardo

May I have a cookie?
This thread bump comes at a very good time for me, as my kid sister has apparently been diagnosed with Asperger's today, after several years of going back and forth between professionals and not getting a conclusive diagnosis. She turns 17 today and has been severely struggling in school for the past couple years, and she's also been behind in many developmental areas which have required careful attention in order to get her to work through them.

But I feel slightly uneasy with this diagnosis as it seems there are other areas where she doesn't fit the descriptions.. The expert who diagnosed her said Asperger's manifests differently in girls, and as others have said there really isn't a lot of common knowledge when it comes to girls in the high functioning part of the spectrum.

I just feel like this particular area is still full of so much conflicting information.. There's ASD, PDD, ADHD, etc. and all seem to fit some of her symptoms better than others in some way, except the treatments are different. She's already been through failed therapy, bad school experiences, improper psychiatric medication and plenty of social and emotional breakdowns, it just feels like she's losing faith in the system and in herself, and we really have to get her on the right track this time or she will sink into deep desperation.
 

dapeel61

Neo Member
Thanks man I appreciate that info and the insight. I have no clue what he is thinking sometimes. I don't get frustrated with him, but sometimes I frustrate him. Last night I turned off a show he was watching and he had a 30+ minute meltdown. I tried to redirect his attention, but it was too late. I had unleashed the rage. I was going to turn on the TV for him but my wife told me not to. She told me that I shouldn't give into his tantrums. Eventually he stopped when I had his dinner in front of him and I gave him milk.

That bolded part is excellent. As much as you may feel bad about it and want to give in, starting early with some kind of behavior training and being consistent is the absolute most important thing you can do. This will benefit you, your family and him in the long run, as he will learn that tantrums and/or aggression won't get him what he wants and he will learn the correct way to ask, and how to accept that he will be told no sometimes.

Also, some states have waiver/assistance programs. Get as much help as you possibly can as early as you possibly can. Don't ever turn down assistance of any kind. Waiting lists for Autism or DD waivers in Indiana were up to 10-12 years when I was still working with autism (I worked in a direct care position for 3 years and managed residential homes for almost 4 so I've experienced both the bureaucratics and the actual care.)

Be patient and show him as much love as you do your other children. You will get frustrated sometimes, but it's always worth it.
 
This thread bump comes at a very good time for me, as my kid sister has apparently been diagnosed with Asperger's today, after several years of going back and forth between professionals and not getting a conclusive diagnosis. She turns 17 today and has been severely struggling in school for the past couple years, and she's also been behind in many developmental areas which have required careful attention in order to get her to work through them.

The "good" news on this front is that the diagnosis should open the door up for her to receive certain assistance and/or therapies that can prove beneficial.

In terms of the label and symptoms, I wouldn't stress on that too much. For starters, aspergers is officially gone in the new DSM and everything now fits under the label of ASD (autism spectrum disorder). Because it is a spectrum, no two people show the same characteristics. There are tons of things my son doesn't show and others he does. For instance, many people on the spectrum struggle with sensory issues, potentially even debilitating. My son has basically no negative sensory problems. He does struggle significantly on the social front, whereas some kids on the spectrum come right up and talk to me.

The game plan should always be to address the individual issues a person struggles with, not a laundry list of autism symptoms.
 

Amir0x

Banned
What a fantastic thread!

SUPER LONG PERSONAL STORY AHEAD

When I was growing up, my Mother was in foster care. She was considered one of the most reliable parents in the system and would frequently take in the most troubled cases. She broke ground with each of them in turn, making what were before problem children into great members of our family. When they left for one reason or another (one girl finally was going back with her true family; another girl who we took in while she was pregnant, had terrible hygiene and manners and was awful at school. By the end of the two years we had her, she was super hygienic, had lost 100lbs, was a great mother of her newborn and took school very seriously; etc. She has made a life for herself and still keeps in contact, etc), my mother was always deeply impacted at an emotional level, but for me - as a kid growing up - I was rather cold to a lot of them and thus never got emotionally connected, maybe out of jealousy or just being a teenager who hates things.



But there was one exception.

One day my mom gets a call from a desperate Mentor Program. Nobody will take in this 8 year old with autism. He is considered one of the most difficult children in the entire system. He could not eat by himself, cannot use the bathroom by himself, could speak no words except "food" and "bye" and - most heartrendingly of all - was so brutally violent to himself that he had to wear a helmet at all times.

This child had the absolute fucking most nightmarish upbringing. When he was born, his parents pretty soon thereafter knew something was seriously wrong about the child. They believed though that it was not medical: he was possessed by the devil. What they did after still makes me deeply emotional to think about. They began to lock him up all alone in the basement in the dark, only occasionally feeding him. When he did feed, they'd toss him the food and let him just go wild on it. His father would try to routinely beat the devil out of him. Every single day, they said, he would go down there and injure him in some way.

When they found him, he was caked in shit, malnourished to the point of damn near skeletal effect, and could not communicate in any appreciable way. He was essentially purple from bruises.

Immediately he was put in the system, passed around because nobody could deal with him. Because of this, he never had a stable environment to learn anything or develop any potential skills. His development wasn't just difficult due to having a severe case of autism, but because he simply wasn't taught anything.

When my mother sat us down to discuss the kid coming, I was my normal "oh here we go again" self. But something happened over the course of the years we had Johnathan. I began to love him. As a brother. As a family member as important to our life as any other. The sympathy and compassion I felt for him was such that I think it helped changed my entire attitude toward life.

What happened? Well, my mother began the tedious work of trying to teach him things. It was exhaustive and my Mom, who was extremely sick with Lupus at the time, fought through it and did everything she could. Mentor could only manage to find a respite for Johnathan once a month on one weekend. Sometimes even that didn't happen. My mom progressively got sicker, but she pressed out. Soon, Johnathan began to showcase the ability to use forks and spoons. He began to slow his eating down; before he would engulf it likely as a holdover from the years he was tortured. He started to indicate when he needed to use the bathroom, pointing at the door and we could guide him there. But most amazingly of all, he did something that one day when I heard it I cried.

My Mom saw him hitting himself daily before, and my mom tried everything to try to mitigate the injuries he would find a way to cause himself even with the helmet. She gave him plush bats to perhaps allow him to hit himself with something softer that wouldn't cause injury; sometimes it was so bad that we had to actually hold his arms to prevent further injury. This would kill my Mom... she felt like a terrible person but didn't know what to do.

But Johnathan was amazing. Slowly but surely, Johnathan's hitting of himself subsided. It never disappeared completely, no, but if before he was doing it once an hour, after he hardly did it once a week. And then one day he was about to himself and for some reason just stopped. He stopped and then looked directly at my Mom and said one word: "Love."

After that, he couldn't stop using the word. He said "Love" to me and my sisters, "Love" to strangers, "Love" to everyone. But when he said it to my Mom, the only time I ever saw this, he actually began to touch her affectionately. He hated being touched! To see him actually initiate this was astounding.

The doctors who had overseen his case since he was first discovered were astonished. They couldn't believe the effort my Mom put in essentially all by herself. But what the Doctors didn't know is how much Johnathan had changed us. When we finally had to give up Johnathan, because my Mom had fallen so deathly ill for a while that she literally was bedridden and Mentor refused to offer anymore respites, she cried every day for a month.




But what I never would have thought at the start of this is that I cried too. I was inconsolable. To this day I feel the most immense type of guilt that we had to give him up. Me and My Mother still visit him in his care home; but I do not have the capacity to take care of him yet and my Mom is currently suffering from an illness that will kill her. Every time we leave that place we still cry. But we smile too. Because Johnathan changed our lives forever.
 

deadlast

Member
Wow... I'm glad to see so many people sharing here.
This past weekend my wife and I watched that Temple Grandin movie. It was pretty amazing because you got to see through her eyes how life is for someone who is autistic.

@aett
My son got an IEP (individualize education plan) through the county and he is getting a boat load of services (in my eyes). He is doing an inclusion special ed pre-K this summer and will be continuing the program in the fall. Soon he will be getting 2 days of speech a week, plus we are doing private speech for him as well. I think we are going to try and get him some ABA and OT as well (those will be out of pocket).
When you go to do your IEP, make sure you have an advocate. Ours cost us a total of 100 or so bucks, and it was worth every penny.
 

Mike M

Nick N
After being on a waiting list for nearly a year, my nephew recently got an intake appointment a couple weeks ago with a specialist (apparently the only one in the state or something) to be screened for atypical autism. He's been screened for autism and Asperger's in the past but didn't quite meet the criteria for diagnosis. Was never screened for atypical/PPD-NOS before, but looking through the Wikipedia page, I will be very surprised if that one comes back negative.

Even if he gets a diagnosis, I don't know what good it will do. We already know he needs intensive behavioral therapy, he already gets disability, so I'm not sure what doors it could open.

This kid and his mom have been living with me for the past year, and it has been extremely trying. The kid is incredibly destructive and utterly oblivious to how wildly inappropriate his behavior is.
 

Amir0x

Banned
Wow... I'm glad to see so many people sharing here.
This past weekend my wife and I watched that Temple Grandin movie. It was pretty amazing because you got to see through her eyes how life is for someone who is autistic.

@aett
My son got an IEP (individualize education plan) through the county and he is getting a boat load of services (in my eyes). He is doing an inclusion special ed pre-K this summer and will be continuing the program in the fall. Soon he will be getting 2 days of speech a week, plus we are doing private speech for him as well. I think we are going to try and get him some ABA and OT as well (those will be out of pocket).
When you go to do your IEP, make sure you have an advocate. Ours cost us a total of 100 or so bucks, and it was worth every penny.

It's good to see you're doing everything right for him.

One of the most difficult things for me was how some of the general public would react to Johnathan. One time we went to a Knicks game and when we left, there was some guy making fun of Johnathan. Why? Why would you do that? I was never angrier in my life.
 

deadlast

Member
My after being on a waiting list for nearly a year, my nephew recently got an intake appointment a couple weeks ago with a specialist (apparently the only one in the state or something) to be screened for atypical autism. He's been screened for autism and Asperger's in the past but didn't quite meet the criteria for diagnosis. Was never screened for atypical/PPD-NOS before, but looking through the Wikipedia page, I will be very surprised if that one comes back negative.

Even if he gets a diagnosis, I don't know what good it will do. We already know he needs intensive behavioral therapy, he already gets disability, so I'm not sure what doors it could open.

This kid and his mom have been living with me for the past year, and it has been extremely trying. The kid is incredibly destructive and utterly oblivious to how wildly inappropriate his behavior is.
His behavior might be linked to some sensory issue. He could be going nuts because he is either over stimulated or under stimulated. I know my son is a sensory seeker. We have to do compression, brush him and use a weighed blanket.
Also after I take my son to the pool, he is a different child (in a good way).
 

deadlast

Member
It's good to see you're doing everything right for him.

One of the most difficult things for me was how some of the general public would react to Johnathan. One time we went to a Knicks game and when we left, there was some guy making fun of Johnathan. Why? Why would you do that? I was never angrier in my life.

Your connection with Jonathan is absolutely awe inspiring.

My brother-in-law was making fun of my son once (before the diagnoses) and it took everything in my power not to beat him to a pulp.
 

Mike M

Nick N
His behavior might be linked to some sensory issue. He could be going nuts because he is either over stimulated or under stimulated. I know my son is a sensory seeker. We have to do compression, brush him and use a weighed blanket.
Also after I take my son to the pool, he is a different child (in a good way).
I really couldn't say, but I guess it's a possibility. I've personally never noticed a difference no matter the sensory level, he's pretty consistent. The behavior I'm talking about is shit like snaking my wife's phone, logging into her Facebook account, and sending messages to some girl he thinks he knows from back where he used to live asking where she goes to school now. There's also issues with him just constantly making weird noises and leaving stuff everywhere among other things.

He's 14, but has the mind of maybe an 8-year-old. He's also been diagnosed as ADHD and having oppositional defiance disorder, but how much of that is just missing the underlying PPD-NOS I can't say. He's essentially a cocktail of extreme laziness, cognitive impairment, and complete lack of social awareness.
 
Our only child was diagnosed with ASD this past April. He turns 3 in August. We immediately began ABA, OT, and speech therapies. ABA in particular has been like magic for him. He's slowly able to relate his needs better, seems to be more in the moment, and genuinely enjoys the challenge of solving puzzles.

According to his therapist, he's high functioning. He had no delays in standing, crawling, walking, or talking. He is particularly advanced in letters (spelling and reading) and numbers (counting). At the age of 18 months he could count to twenty in English and Spanish, and could identify every letter in the alphabet.

We were always amazed at his intelligence, but failed to notice his lack of social development. We always considered him shy and just thought he needed more opportunities to play with other kids. After getting him into play groups, we noticed he doesn't really pay any attention to other kids and prefers to do his own thing.

In terms of symptoms that he displays, he does show signs of stemming when he gets overly excited, jumping up and down and sometimes flapping his wrists. He does enjoy organizing, categorizing, and lining up his toys. He struggles with eye contact, even when he is clearly listening to what we tell him. He does struggle some with change, but we've noticed that by preparing him with clear countdowns ("Five more minutes and then we have to go") have helped him a ton. Probably the most noticeable outward sign is he constantly likes to talk, hum, sing, or recite words from books or songs he really likes.

This school year we're enrolling him into an intervention preschool which is 50/50 special needs and normally developing. We'll continue with his ABA, OT, and speech as well. Our hope is that by age 5,we can mainline him into school. He is such a great kid overall, and as frustrating as things can be at times, we will never stop loving and caring for him.
This sounds exactly like my son. At around 3 he was diagnosed as Spectrum (PDD-NOS) and started to receive services through the county (Chester County PA, excellent program) right away and he's thrived. He was in an Early Intervention Pre-School in the afternoons and a typical pre-school in the mornings. He did great. I like how you have him in a blended environment, we feel that was a critical decision that we made. He's 7 now and in a mainstream elementary school, going into second grade (we held him back a year). He's still awkward socially but improving, we've worked on giving him the skills to engage with people, what he chooses to do with them is his decision. He's made some friends, kids similar to him, they love Minecraft and their 3DS's lol. We have him enrolled in a karate program and he's doing really well, his Shifu is very understanding and patient with him. We were devastated when he was diagnosed, all kinds of feelings flow through you. Looking back now it seems kind of silly but also completely understandable. You guys who have little ones who have been diagnosed so early have good reason to hope; the strides they've made in therapies that last 10 years or so are extraordinary. You can be optimistic.

Great thread btw, I am enjoying reading about everyone's experiences. Thanks for making it. Ask any questions of me that you want, either in the thread or PM
 

Anura

Member
What a fantastic thread!

SUPER LONG PERSONAL STORY AHEAD

When I was growing up, my Mother was in foster care. She was considered one of the most reliable parents in the system and would frequently take in the most troubled cases. She broke ground with each of them in turn, making what were before problem children into great members of our family. When they left for one reason or another (one girl finally was going back with her true family; another girl who we took in while she was pregnant, had terrible hygiene and manners and was awful at school. By the end of the two years we had her, she was super hygienic, had lost 100lbs, was a great mother of her newborn and took school very seriously; etc. She has made a life for herself and still keeps in contact, etc), my mother was always deeply impacted at an emotional level, but for me - as a kid growing up - I was rather cold to a lot of them and thus never got emotionally connected, maybe out of jealousy or just being a teenager who hates things.



But there was one exception.

One day my mom gets a call from a desperate Mentor Program. Nobody will take in this 8 year old with autism. He is considered one of the most difficult children in the entire system. He could not eat by himself, cannot use the bathroom by himself, could speak no words except "food" and "bye" and - most heartrendingly of all - was so brutally violent to himself that he had to wear a helmet at all times.

This child had the absolute fucking most nightmarish upbringing. When he was born, his parents pretty soon thereafter knew something was seriously wrong about the child. They believed though that it was not medical: he was possessed by the devil. What they did after still makes me deeply emotional to think about. They began to lock him up all alone in the basement in the dark, only occasionally feeding him. When he did feed, they'd toss him the food and let him just go wild on it. His father would try to routinely beat the devil out of him. Every single day, they said, he would go down there and injure him in some way.

When they found him, he was caked in shit, malnourished to the point of damn near skeletal effect, and could not communicate in any appreciable way. He was essentially purple from bruises.

Immediately he was put in the system, passed around because nobody could deal with him. Because of this, he never had a stable environment to learn anything or develop any potential skills. His development wasn't just difficult due to having a severe case of autism, but because he simply wasn't taught anything.

When my mother sat us down to discuss the kid coming, I was my normal "oh here we go again" self. But something happened over the course of the years we had Johnathan. I began to love him. As a brother. As a family member as important to our life as any other. The sympathy and compassion I felt for him was such that I think it helped changed my entire attitude toward life.

What happened? Well, my mother began the tedious work of trying to teach him things. It was exhaustive and my Mom, who was extremely sick with Lupus at the time, fought through it and did everything she could. Mentor could only manage to find a respite for Johnathan once a month on one weekend. Sometimes even that didn't happen. My mom progressively got sicker, but she pressed out. Soon, Johnathan began to showcase the ability to use forks and spoons. He began to slow his eating down; before he would engulf it likely as a holdover from the years he was tortured. He started to indicate when he needed to use the bathroom, pointing at the door and we could guide him there. But most amazingly of all, he did something that one day when I heard it I cried.

My Mom saw him hitting himself daily before, and my mom tried everything to try to mitigate the injuries he would find a way to cause himself even with the helmet. She gave him plush bats to perhaps allow him to hit himself with something softer that wouldn't cause injury; sometimes it was so bad that we had to actually hold his arms to prevent further injury. This would kill my Mom... she felt like a terrible person but didn't know what to do.

But Johnathan was amazing. Slowly but surely, Johnathan's hitting of himself subsided. It never disappeared completely, no, but if before he was doing it once an hour, after he hardly did it once a week. And then one day he was about to himself and for some reason just stopped. He stopped and then looked directly at my Mom and said one word: "Love."

After that, he couldn't stop using the word. He said "Love" to me and my sisters, "Love" to strangers, "Love" to everyone. But when he said it to my Mom, the only time I ever saw this, he actually began to touch her affectionately. He hated being touched! To see him actually initiate this was astounding.

The doctors who had overseen his case since he was first discovered were astonished. They couldn't believe the effort my Mom put in essentially all by herself. But what the Doctors didn't know is how much Johnathan had changed us. When we finally had to give up Johnathan, because my Mom had fallen so deathly ill for a while that she literally was bedridden and Mentor refused to offer anymore respites, she cried every day for a month.




But what I never would have thought at the start of this is that I cried too. I was inconsolable. To this day I feel the most immense type of guilt that we had to give him up. Me and My Mother still visit him in his care home; but I do not have the capacity to take care of him yet and my Mom is currently suffering from an illness that will kill her. Every time we leave that place we still cry. But we smile too. Because Johnathan changed our lives forever.

I usually find myself agreeing with and liking your posts

But not this one... You stepped your game up and I really LOVE this post much more that the rest I've seen from you

To say like would be a disservice

Great story
 

Pakkidis

Member
I have worked with autistic children in a school setting. Glad you are out of denial and getting the help he needs. Some advice, get some visual aids in place around the house to help him and set up a structure for him to follow to make his day easier.
 

deadlast

Member
I have worked with autistic children in a school setting. Glad you are out of denial and getting the help he needs. Some advice, get some visual aids in place around the house to help him and set up a structure for him to follow to make his day easier.

How do I do a picture chart for going to the bathroom?
 

deadlast

Member
AMC is doing Sensory Friendly Films at a lot of their theaters. We're going to try it out this weekend. Showtimes are at 10am. but you have to check with the local theater.

We Bring AMC Sensory Friendly Films to Families Affected by Autism on a Monthly Basis to Select Communities.

The program provides a special opportunity for families to enjoy their favorite films in a safe and accepting environment. The auditoriums dedicated to the program have their lights up, the sound turned down and audience members are invited to get up and dance, walk, shout or sing!

The idea for the program began with a request from a parent with an autistic child for a special screening at AMC Columbia Mall 14 in Columbia, MD. More than 300 children and parents attended the first screening.

We are thrilled to now offer the program at many locations nationwide — please see below for a complete list of participating theatres. As a leading theatrical exhibition company, we are so proud to be making a difference in the estimated 1.5 million Americans living with an autism spectrum disorder by offering families a chance to see a movie together — often for the very first time.

Here are the movies and the dates
  • July 13, 2013 - DESPICABLE ME 2
  • August 10, 2013 - THE SMURFS 2
  • August 31, 2013 - Planes
  • October 5, 2013 - CLOUDY WITH A CHANCE OF MEATBALLS 2
  • November 9, 2013 – FREE BIRDS
  • December 7, 2013 - FROZEN 2-D

Here's the Link
 

efyu_lemonardo

May I have a cookie?
Secondly, I recently received training that suggested the entire manifestation of autism is summed up by hyper-sensitivity and hypo-sensitivity to sensory experience (ie, over and under sensitivity). And in each individual it can manifest either way, to some but not necessarily all senses. For example someone with autism could be really unresponsive to touch, and therefore slam and bang things, not seem to get hurt, over-exert themselves etc. Or they could be completely over-sensitive to touch, hate physical contact, and try to limit or exclude all sensations of touch. So it's like having the volume turned too high or too low on your various senses. Apply the same to sound, vision, taste etc ...

This is fascinating, I'd love to read more about it. Can you recommend any articles or books further explaining this hypothesis?
 

waypoetic

Banned
Good luck... But people don't give a shit. Just look at how americans throw around jokes about ADD and ADHD and have no frickin clue of what it is - how and why it affects the person that has the disorder. They don't fucking care man, they're just out for a cheap laugh.

For example: "yeah i've got too many games to play man, i'm like a ADD gamer you know lol".

Oh my eye just twitched - LOOKS LIKE I'VE GOT CEREBRAL PALSE EVERYBODY!!

Shut the hell up.
 

Raiden

Banned
Good luck... But people don't give a shit. Just look at how americans throw around jokes about ADD and ADHD and have no frickin clue of what it is - how and why it affects the person that has the disorder. They don't fucking care man, they're just out for a cheap laugh.

For example: "yeah i've got too many games to play man, i'm like a ADD gamer you know lol".

Oh my eye just twitched - LOOKS LIKE I'VE GOT CEREBRAL PALSE EVERYBODY!!

Shut the hell up.

People make bad jokes about everything, learn to deal with it. I was diagnosed with ADHD when i was 5 or 6. Sometimes jokes are just jokes.
 

MechDX

Member
Good luck... But people don't give a shit. Just look at how americans throw around jokes about ADD and ADHD and have no frickin clue of what it is - how and why it affects the person that has the disorder. They don't fucking care man, they're just out for a cheap laugh.

For example: "yeah i've got too many games to play man, i'm like a ADD gamer you know lol".

Oh my eye just twitched - LOOKS LIKE I'VE GOT CEREBRAL PALSE EVERYBODY!!

Shut the hell up.

I will admit I made those type of jokes before my son was diagnosed. Now when someone makes comments, usually about "little yellow bus", I give a serious stare down. When they ask what's the matter I explain the situation and they always feel like a horse's ass and I explain how it just is not funny and how bad I felt when we got the diagnosis.

The biggest concern I had when we got the word was how my son would be treated growing up. I was picked on and bullied because I was different, northerner living in Texas and overweight. I was more concerned for how my son would respond. He is the most loving and polite child to everyone even towards those other kids who look and snicker.
 

waypoetic

Banned
People make bad jokes about everything, learn to deal with it. I was diagnosed with ADHD when i was 5 or 6. Sometimes jokes are just jokes.

That's not fair nor professional for a doctor and psychologist to diagnos a kid that young with ADHD. If you were to "screen" any kid at that age you'd have them all diagnosed with ADHD.
 

Raiden

Banned
That's not fair nor professional for a doctor and psychologist to diagnos a kid that young with ADHD. If you were to "screen" any kid at that age you'd have them all diagnosed with ADHD.

Ofcourse it was bullshit. They prescribed me drugs but my mom would not allow me to take them. I did have to do a couple of years of therapy. Eventually when i got older things solved themselves.
 

deadlast

Member
Whooo hooo, we go approved for LISS funding for my son. We only requested an alarm system for the house ( he's a wanderer) and an iPad. Both these items should help tremendously.
 
I'm in Maryland.

Check out Kennedy Krieger. I've heard good things about them.

http://www.kennedykrieger.org/patient-care/patient-care-centers/center-autism-and-related-disorders

My wife uses this program for visual schedules: http://www.pictoselector.eu/

picto_selector-341707-1266943712.jpeg


We also looked into The Eating Game for meals for the kids, but we couldn't afford it at the time. http://theeatinggame.ca/

If you have any questions, let me know. We live in Maryland as well.
 

deadlast

Member
Check out Kennedy Krieger. I've heard good things about them.
If you have any questions, let me know. We live in Maryland as well.

Thanks... We had our kid tested at Childrens in Rockville and at NIH.
Childrens wrote up a fantastic report that was very clear and concise.
I found that NIH is the best place to get your child observed for a diagnoses, if you are on a budget. NIH has different Autism studies and will perform all of the tests required to determine if your child has Autism.
 
Thanks... We had our kid tested at Childrens in Rockville and at NIH.
Childrens wrote up a fantastic report that was very clear and concise.
I found that NIH is the best place to get your child observed for a diagnoses, if you are on a budget. NIH has different Autism studies and will perform all of the tests required to determine if your child has Autism.

We were "lucky" enough to get turned down for LISS because we weren't in imminent need, ie: they didn't think our kids were disabled enough.

If you have a kid that elopes or melts down easily, like my oldest, look into a handicapped placard.

Look into SS(D)I if your income isn't too high. Helped us when we only had my income the first few years.
 

deadlast

Member
We were "lucky" enough to get turned down for LISS because we weren't in imminent need, ie: they didn't think our kids were disabled enough.

If you have a kid that elopes or melts down easily, like my oldest, look into a handicapped placard.

Look into SS(D)I if your income isn't too high. Helped us when we only had my income the first few years.

Thanks Man.

I believe we applied for the SS(D)I, but I'm not sure because everything has been in whirlwind state for the last few months.
 
Hey guys, should I put my son in sports? If so, which one?

Also, what about music classes and other art classes. Are those venues positive?

An occupational therapist recommended swimming classes for my autistic 4-year old since it would help with his sensory needs.

I found this article about the work of Henry Markram, a leading neuroscientist and father of an autistic boy, fascinating and wanted to share it.
 
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