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PostPosted: Fri Apr 22, 2011 2:43 pm 
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As someone with AS (and ADHD, but that's a whole different story) I highly approve of this thread. :)


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PostPosted: Fri Apr 22, 2011 7:03 pm 
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http://www.wecreatewellness.com/chiropr ... for-autism

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PostPosted: Tue Apr 26, 2011 9:00 pm 
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jayferg76 wrote:
One of the other big problems is food. Korben has a very limited diet, because he doesn't like the texture and/or colours of most foods. He will eat apples, grapes, bananas and melon; but not oranges, pears, kiwi etc. He won't eat cheese on it's own, but on pizza he's fine. Rice and pasta are out, as are most veg, but he will eat broccoli, carrots, peas and potato, but only if they're cut up small and boiled. He's fine with fish and chicken (and turkey if we tell him it's chicken) but any red meat is a no-no. He won't eat eggs and only drinks water, milk or tea.
So, how the hell do i pack a bob with that to contend with? Obviously drinking's not a problem, but i could be looking at some weight and storage issues when it comes to food. If it's not something off that list he just will not eat. It's bad enough going out for a meal, so what it'll be like if the poo hits the breeze machine i hate to think.


Just been looking at the how to build a bob thread. I didn't realise that some of those ration blocks come in cookie flavour (can't remember the name of them off-hand), but maybe that's the way to go, at least for a 24-72 hour bug out. At least there's a good chance that he'll eat those and get some nutrients from them.


I have a son now 8 with PDD-NOS another term for autistic children. My son will only drink fluids that are green or in a green container. He is picky about his foods and will almost eat the same diet consistently. I have over the period been able to introduce him to foods with the statement "try it once if you don't like it you don't have to eat it." I know every kid is different but attempting to try the different survival bars and possibly dehydrated foods(re-hydrated) as a pre-cursor may help you with BOB and long term storage of food for your child and give him a chance to express likes and dislikes. I leave that to you because each Autistic kid is different and each parent know them better than a total stranger.

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PostPosted: Thu Apr 28, 2011 7:30 am 
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I got some energy bars last week and tried him with them. He'll eat certain cereal bars for breakfast, so i just told him that's what they were (after taking them out of the wrapper first). He did eat them, but he knew they weren't his normal ones, and did make a bit of a fuss about it.
We also ask him to try stuff once, but it's mostly unsuccessful. I've had people say to me "make him eat it, and if he won't eat it don't give him anything else, he'll eat it when he's hungry enough". But when you try and explain his problem, they just think he's a difficult kid. Really pisses me off.


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PostPosted: Thu Apr 28, 2011 1:08 pm 
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jayferg76 wrote:
I've had people say to me "make him eat it, and if he won't eat it don't give him anything else, he'll eat it when he's hungry enough". But when you try and explain his problem, they just think he's a difficult kid. Really pisses me off.

I get that a lot same thing pisses me off. Unfortunately til they walk in our shoes they will never know. I am glad he was receptive to the bars will make things slightly easier in a potential difficult situation. I dread the day I may have to use the little prepping i have done. But, I hope that I will be able to help my son get through the situations that may arise for us to need it.

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PostPosted: Thu Apr 28, 2011 4:05 pm 
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I have a nephew diagnosed with autism. I've been reading this thread, but don't have much useful to contribute yet. Does anyoen know of a good forum or community to help the families cope and understand?

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PostPosted: Mon May 02, 2011 8:03 pm 
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autism speaks, Autism-society.org there a quite a few just search the web and poke around a bit.

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PostPosted: Tue May 03, 2011 6:56 pm 
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Being a sufferer of Asperger's Syndrome myself I cannot stress enough about being patient. And this includes understanding and just talking to them. I also approve of this thread because it is a valuable thread. I will also not be on as much. I have been doing this before and I am doing it now. I need to stop that. :lol: Well anyway that is all for now.


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PostPosted: Wed May 04, 2011 1:56 pm 
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Honestly... I really, really would not recommend Autism Speaks as an autism charity. They really don't speak for autistic people, either adults or kids or their families.

Most of us are actually pretty mad at them.

Reasons why:
--They pay their directors six-figure salaries... while claiming to be a "non-profit" organization. They spend a lot of money on "awareness", which can include paying huge sums to celebrities at fundraisers and paying for top-of-the-line catering. They're basically using donations made in good faith to have high-class parties.
--Their portrayal of autism is unrealistic, designed to make people fear and pity autism. They have been known to claim that autistic children are "empty shells", that we can't love our parents, that we break apart marriages and drain bank accounts, and that we are better off not existing at all. One famous example has an Autism Speaks director claiming that she has wished she could drive off a bridge and kill her autistic child, but was stopped because her non-autistic child was also in the car with them. The recent "I am Autism" video was nearly as offensive. They have also compared autism to pediatric AIDS or death in car accidents. If you don't see why this kind of thing is a problem, imagine having a child newly diagnosed, or being a child newly informed of his diagnosis, and knowing only what Autism Speaks tells you about autism. That is absolutely devastating.
--They don't support real autistic people in the world. Most of the money that doesn't go to "awareness" will go toward research aimed at finding a prenatal test that can abort autistic people before they are born. It's a very strong message: "We don't want people like you to be born." Eugenic abortion, in other words.
--They refuse to have autistic people have a real say in their organization. Their board of directors is entirely non-autistic. No autistic person has a decision-making role at Autism Speaks.

Case in point:
Google search using the terms "Autism Speaks" and "Autistic people"
So yeah, this isn't just a fringe group getting annoyed at Autism Speaks; it's a huge chunk of the autistic community. We're frankly sick and tired of having Autism Speaks tell everybody we're walking blobs of autism who deserve only pity rather than inclusion, acceptance, jobs, education, and general equality with everybody else. It's hard enough to convince people you can contribute to the world just like anybody else can, without people like Autism Speaks to insist that you're fundamentally incapable and have to sit around waiting for a cure before you can live your life.

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PostPosted: Thu May 05, 2011 5:56 am 
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callista wrote:
It's hard enough to convince people you can contribute to the world just like anybody else can, without people like Autism Speaks to insist that you're fundamentally incapable and have to sit around waiting for a cure before you can live your life.

I'm not Austistic, but I fucking love this statement!

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PostPosted: Thu May 05, 2011 7:19 am 
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callista, thank you for posting this.

I have a younger brother (23) that is autistic.
for the past 20yrs I just couldn't seem to understand him.
for example telling him something and he just stands there... staring at you. :evil:
He seem pretty normal,... mostly... he is my brother after all. :lol:
Anyways what has been said here makes sense to me.
I can see his perspective a little better?

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PostPosted: Thu May 05, 2011 9:33 am 
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I often think it must be a little like learning to understand someone from a different culture--someone who thinks differently, does things differently. Maybe you'll never understand him as well as you do someone who isn't autistic, but it's not like there's some insurmountable gap. After all, non-autistics (we call you guys "neurotypical", or NT, usually) are social specialists--people who are naturally good at connecting with other people. You don't really notice most of the time because NTs are the biggest group, so it seems normal; but seriously--you're social savants. You do absolutely amazing things. I've seen people communicate complex ideas with only a few words and a lot of body language; I've seen people work together with very little spoken communication, just meshing together into a big unit like they'd been trained for weeks. It's actually pretty amazing, if you think about it. No less amazing just because most people can do it. And that's what helps people connect even with those who are not quite like themselves--other cultures, other races, and people with different kinds of brains. It's what allows us to make a society where everybody can pitch in, not just the people who have the regular sort of brain configuration. :)

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PostPosted: Wed May 25, 2011 8:38 am 
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From a parent of a beautiful soon to be 7 year old girl, who is mild/moderate spectrum of autism along with the many other disorders that go along with autism, I truely know the daily trials and tribulations that goes along with it. Thankfully she has a daddy that is a soldier, and a survivalist. She was being taught at a very young age about survivalism and cmping and fishing and the such. when we do our Bug Out rehearsals i make her tasks and roles the same thing everytime. everything on what she loads into the truck, to what she does when we get to our destination to meal preperations etc.

I will admit it is very hard, and i dont want to think of WTSHTF, and she runs out of her meds. Off of her meds she turns into a child that would even scare away zombies. the tantrums, the crying, the inability to cope with the everyday events etc., but either way we will work through it like we always do.

its funny someone mentioned diet for their child. My daughter has a very strict diet that she will eat. Green Beans, cheese curls, and mac and cheese. She wont eat the skin of a hotdog, she freaks out if she sees tapioca pudding.

One of the best coping tools we have ever gt her, by recommendation of her former therapist from texas, was a Guinnea Pig. When we got prince he was baely the size of my hand. Now he is a the length of my forearm and weighs about 3-4 pounds. He whistles with you, he is tamer then any pet we ever had, and is an absolute riot. It has been her responsibility from day one to take care of him minus cleaning the bedding. She has to feed him, give him water and love him. The reason why the therapist suggested him was due to a way of coping and calming down. If she gets frustrated or has one of her meltdowns, we were instructed to ask her if she would like to hold Prince. We then tell her she has to stop whining and crying because it will hurt his little ears. And guess what it works beautifully. Now it has gotten to the point where prince often goes camping with us too.

BTW Morgen is a very advid outdoorsman. she loves camping, hiking, exploring and fishing.

BTW quick funny story. I was detained by walmart security because of my daughter having one of her meltdowns. We went to walmart to do grocery shopping one satrurday afternoon. My wife left the family to go grab some stuff on the otherside of the store since my daughter alredy started her meltdown to help us get out quicker.

I continueds shopping with little miss Morgen and my other daughter as my son ran off with mommy (trying to coax her into letting him get a new videogame). anyways as we were getting down to the last 2 aisles, i was met by the store manager, an irate hippy customer and security.

Apparently they thought I was a kidnapper since they heard my daughter crying at the top of her lungs for her mommy (remember mommy went to other end of store for other things we needed). the security led me and my daughters to the backroom where the security office was. After hearing the allegations i blurted out " Are you really that F*cking stupid or did you get a masters degree in stupidity? if I was abducting a child I wouldnt walk around the store for 45 freaking minutes with the child screaming while I continue to shop!" they just stared at me for a few minutes absolutely stunned. I then proceeded to tell them that she autistic and was having a meltdown, and that the other girl was also my daughter, and my wife and son are in the store as well, with my childrens military dependant ID cards, to verify off of my Military ID card.

At that point the paged my wife, and when she arrived they verified the information I gave them. At that point they gave us a gift card for $25.00 for our understanding of the hippy womans allegations. We never went back to tht walmart from that day on.

That walmart was 2.5 miles from our home we had at the time. we drove 10 miles out of our way to go to another walmart from that day forward.

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PostPosted: Wed May 25, 2011 8:58 am 
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CryHavoc wrote:
http://www.wecreatewellness.com/chiropractic-offers-hope-for-autism


No, it doesn't. It's not irritable bowels, and chemical castration doesn't help either. I understand that parents and people with autism want answers, but quackery isn't the place to get it. They sell hope, but little else. Big pharma isn't out to get you, they're not withholding information that could make you better. Scientists, real scientists, are working on autism as we speak, please don't fall for these scams and people like Jenny McCarthy.

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PostPosted: Wed May 25, 2011 3:43 pm 
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That Lupron scam? Ugh... yeah, that one gives me the willies. Messing with a kid's hormones is not a good thing, however way you slice it; and there's absolutely no scientific evidence to back it up. And on top of that, it may mean they can never have kids of their own. Personally, I don't want kids; but you can bet I'd be suing the pants off anyone who denied me the option.

Chiropractors should stick to back problems. That's what they do best. Autism? Not so much.

The best way to treat autism is to teach the kid useful skills that he will use as he grows up and goes out on his own. Simple as that. Talking, taking care of yourself, managing your crazy sensory system, learning to organize your time, start and stop activities, understand other people... All of that stuff. And it makes a lot of sense to do all the things that help a child stay healthy, like giving them wholesome food and lots of space to run around. You can't erase the autism; it's built into the DNA and built into the brain. But you can raise a happy, healthy, competent autistic child.

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PostPosted: Thu May 26, 2011 12:49 am 
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callista wrote:
But you can raise a happy, healthy, competent autistic child.


that is the only thing I care about for my daughter. well said calista! BTW she graduated 1st grade 2 days ago. she is so proud!

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This is an awesome thread! I started reading it in the hopes that I might learn a little more about autism, and working with kids who have it, as a couple of my youth group students are diagnosed with Asperger's. I was wrong, I didn't learn a little, I learned a LOT! Thank you to the autism-diagnosed contributors to this thread- you've given me a little bit of insight from the student's point of view I would never have gotten otherwise.

My youth group's program was never designed with any kind of special needs kids in mind (frankly, we felt lucky to get ANY kids involved; it's not a popular concept these days, chivalry), and I've been amazed at how well it's worked out for quite a few kids with different diagnoses. I'm in no way qualified to tailor the program to these types of disorders (and I'm not fond of using that word for it), so anything that gives me ideas in how to help them progress and stay interested is greatly appreciated.

I'm also surprised at the autistic community's feeling towards Autism Speaks, I had no idea about it. I've been involved in charity walks and fund raising for them, and I'll have to do some research on this now- I may be reconsidering my involvement, if all you said is true, Callista (and I have no reason to think it isn't, but due diligence, etc). Being an epileptic myself, I can easily envision how I'd feel if such a situation was in place for something called Epilepsy Shakes. (Can you imagine the board meetings?)

I have both a sister and a daughter who have CP, and the very idea of anyone suggesting that either of them be sterilized simply makes my guts churn in both disgust and anger. Their disabilities alone limit their chances at a happy relationship, how dare anyone limit their chances even further? This is a good example of why the word "invalid" is (rightfully) no longer in use in the medical field for describing disabled people.

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PostPosted: Sat May 28, 2011 1:33 am 
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BigDaddyTX wrote:
CryHavoc wrote:
http://www.wecreatewellness.com/chiropractic-offers-hope-for-autism


No, it doesn't. It's not irritable bowels, and chemical castration doesn't help either. I understand that parents and people with autism want answers, but quackery isn't the place to get it. They sell hope, but little else. Big pharma isn't out to get you, they're not withholding information that could make you better. Scientists, real scientists, are working on autism as we speak, please don't fall for these scams and people like Jenny McCarthy.


Holy crap. How do people do such things? And their basis? Pure quackery at its best:

Quote:
This is a perfect example of how the innate intelligence of the body can heal itself when given the right tools. Notice in this story they did not say that Max had back or neck pain. Max was a child that had interference in his nervous system that was not allowing the body to function and express itself as it was designed to do. The chiropractor simply removed this interference in the nervous system, through an adjustment, and allowed Max’s body to express itself fully.

It’s like taking your child from a 40-Watt light bulb to a 100-Watt light bulb. Both produce light and have energy, but one is able to express itself in a greater capacity and exude more energy and light. Chiropractic kids are functioning at 100-Watts, “normal” children are at 40-Watts … what would you like your for your growing child?


Simple, understandable nonsense. Autistics are like light bulbs, just turn them up a little...

...speechless.

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PostPosted: Sat May 28, 2011 3:26 am 
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so yesterday was our children's last day at school. this caused a change in pattern for my daughter. she is aware it was the last day of school. she asked my wife if she can still go back everyday to be with the teacher. my wife relied with a no she will be at her home. then she asked if she will be her teacher again next school year, my wife told her no you will have a new teacher. this caused a thermonuclear meltdown for Morgen. My wife said she started around 3pm and was still having her tantrums when Morgen finally fell asleep around 1am.

Perfect scenario of the coping abilities Morgen often has... little to none. other days she is the sweetest, most enthusiastic, adaptable child you will ever encounter.

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Blacksmith wrote:
Holy crap. How do people do such things? And their basis? Pure quackery at its best:


It's why I have to speak up whenever I encounter Alternative medicine.

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My special-needs 12yo son isn't autistic, but he has some similar developmental issues due to 22q11 deletion syndrome (VCFS) plus cardiac issues and a special diet. He is pretty functional but he has a hard time if he's cooped up while bored; a Nintendo DS and headphones/chargers/batteries might be a luxury for some, but you can bet if we were without power and cooped up for 3 days due to a hurricane hit, or were stuck in bumper to bumper traffic for hours during an evac, we'd be glad we had it with us.

Having a special-needs kid can definitely alter the "bug out or bug in" calculus in favor of staying put if you can possibly do so. And if you have to go somewhere, having a familiar place to go (with pre-stocked special-needs supplies), i.e. a relative's house, is probably superior to trying to go somewhere less familiar. You also have to carry a lot more supplies if you do go, depending on the condition (in my son's case, he is totally dependent on canned nutritional formula since he can't eat solid food yet).

It's gotten better, though. For a while (prior to his second heart surgery) my son was on full time oxygen, and we lived in hurricane country. That posed special challenges for evac; I made a crash-resistant oxygen tank holder for our then-minivan capable of holding a couple of full size O2 cylinders, and we would have headed for a hospital if we couldn't evac somewhere with power for the O2 concentrator (and once he transitioned to a LOX tank, a hospital would have been the only real choice).


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Great thread! I have 3 kids that fall on the high end of the autism spectrum, now adults. I've also worked as a home care nurse for many years with children with severe disabilities that require a nurse. Some observations:

1. It is really better to talk about a person WITH a disability or person WITH autism rather than a disabled person or an autistic person. This humanizes the person and puts the person ahead of the disability. It's just a good way to get people to think of the PERSON FIRST.

2. Have lots of backup plans. Bugging in is preferable to bugging out for many reasons - not upsetting the routine being one. Know your other options and familiarize the child with the place or places they might go. Change is hard enough, going someplace they've never been can cause a total meltdown. Practice things like home fire drills, day without electricity, camping, etc. The more you can familiarize them with things the less out of the ordinary it will seem.

3. Consider a generator, especially if you have a child with more serious medical needs.

4. Make sure you always have adequate supplies of medicine and special foods on hand. Try to choose a pharmacy that is least likely to close down completely for things like weather, preferably within walking distance.

5. Make sure local emergency responders know your situation. I can't stress this enough. Many 911 systems can "flag" an address and bring up additional info when a call comes in. Try to arrange for emergency responders to meet the child. A lot of times there are BBQ's and stuff that are fundraiser/community PR events you can take your child to. The more people like that know about the family member, the better equipped they are to help you and the more they will make you a priority. This is especially true for kids with issues where they may not seem fully "with it", if first responders know the kid and his baseline - they will understand what's different if you have to call 911. There are some good programs for teaching first responders how to work with mental health issues - NAMI has a good one. See if it's been given in your town and if not, maybe you can help set it up. (Another warning about Autism Speaks - I went to one of theirs and it was awful!). Unfortunately, another good reason for making sure that emergency services, including police, understand the problem and know your child is that people with autism are at high risk of being tased, restrained and otherwise treated inappropriately. The lack of ability some of these people have to follow directions can be a problem for law enforcement. Some actions may seem threatening if the police aren't prepared. Not a big problem when they're little but for teens and young adults, it is.

6. Educate as many other people around you as you can about your child's special needs. Often, parents are the only ones that really know and they are isolated in this, afraid to leave the child with sitters or family or neighbors. What if you are unable to take care of your child? Make sure somebody knows. Make sure that your neighbors at least know more than "that weird kid next door". Try joining a support group where you can interact with other parents in your situation. Being prepared for emergencies is high on the list for anyone who has a child with a disability.

I'm sorry this is so long, but, it's such an important topic and one very dear to me. I have many years of personal and professional experience in this area. If anyone wants to PM me for more specific suggestions or questions, please do.


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PostPosted: Sat Jul 09, 2011 1:23 pm 
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One more thing, children with disabilities can often grow up to be very functional adults. If someone works with them to bring out their gifts and find the uses for their differences, they can do so well. Not everyone can be independent, there are some children who will be dependent upon someone for life. But, they too have their contribution to make.

My son, who couldn't even go on school field trips because of the panic the change in daily routine caused is now 21. I worked hard on helping de-sensitize him to things that caused the anxiety and accepted him for who he is. He got an ROTC scholarship to college where he is studying History (fascinated by dates) and he plans to make the military a career. All the rules and the rigid framework are what he thrives on. He can deal with the idea of going different places because wherever he goes, the rules and the framework stay the same. There's always a "right way" to do things which is good for someone who can't deal with anything ambiguous.There's lots of preparation before anything happens. So far he has only had to go for different training schools at different bases. But, I think he found his niche. It won't work for every child with "issues" but it works for him.


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PostPosted: Mon Sep 05, 2011 9:07 pm 
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DarkAxel wrote:
Prepping advice for families dealing with autism?


2.) Seek a second opinion. Autism is a very over-diagnosed disability, much like ADD or ADHD. Treating a person like they have Autism when they have another form of disability does them no favors. Do the best you can to make sure the diagnosis is as accurate as possible.


Number two is especially important, my 3 year old son has Sensory Processing Disorder, which shares some similar signs has autism and is often a co-existing disorder. However as is the case with my son, it can be the only special needs concern that a child has. Helping the child cope is similar to one with Autism so there is a world of information and help out there with normal life activites. However you need to learn YOUR child and learn how they deal with upsets and changes to their routine.

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