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OT- Anyone raising a child with autism? Or experience? Resources?

TeachMePlease

Diamond
Joined
Feb 11, 2014
Location
FL
So, my girlfriend has an almost 3 year old. We've been together for about the past year. Last night, we had a long, serious talk about some behaviors we've seen him exhibit. Honestly, this is all new to me, so I tried to chalk things up to normal childhood development.

But both my parents, who work in the school system with developmentally delayed kids have asked me if I think he's got Autism. Obviously, I never said anything to her, until last night, when she mentioned it first. We had an earnest conversation, and we're both at least a bit worried about it.

Just wondering if anyone here has raised a child with autism, and if there's any resources you can recommend. Anything from helping identify it, to dealing with it, to whatever.

And yes, I know, nobody here is a doctor or psychologist, and we will be speaking with her pediatrician at his next checkup. Just looking for any info/reading material I can get.


Thanks guys.
 
Yes, we have a 30 yr old son who is non verbal and still in diapers. There are many different levels of Autism but our son was very noticeable at an early age. We love him as much or more than the rest of our kids even tho it has been a struggle. The fact that your girl friend brought the subject up is a plus because there is usually lots of denial that goes along with Autism and that your child is not "normal". Read up on the subject and reach out for all the help you can from the professional community. Daryl
 
I have worked with several teen children with autism. This is definitely a very diverse disorder, there is no "cookie cutter" outline of how things will be. Some will struggle more than others. Some cases are very slight, while as above, some are quite severe. They are still wonderful people, just a different set of challenges.

My .02, get several professional opinions. I have seen things misdiagnosed and over medicated many times!
 
I have a nephew with Aspergers. Much the same symptoms as autism. But he's super bright, just missing the social boundary's we "normal" people have. Many years since, I gave up discussing with him, according to him the Internet is the hole truth.. :)
 
I have worked with several teen children with autism. This is definitely a very diverse disorder, there is no "cookie cutter" outline of how things will be. Some will struggle more than others. Some cases are very slight, while as above, some are quite severe. They are still wonderful people, just a different set of challenges.

My .02, get several professional opinions. I have seen things misdiagnosed and over medicated many times!

+1 on the diversity. I have worked in special schools with autistic children, and they are indeed all different. How could they not be? Everybody is located at some point on the autistic spectrum - that's what a spectrum is - but it is only at the extreme ends that it gives problems functioning in society, when intervention may be beneficial. (At the opposite end of the spectrum from autism, people who are excessively complaisant (not complacent!) run into social difficulties of their own.)

I suggest seeking lots of advice. Try to avoid 'over medicalising' his condition if he is indeed autistic. Never let him get away with 'I'm autistic so I have to behave like this' as an excuse for unsocial behaviour. He may well find difficulty in understanding the world he lives in, but many autistic people can learn to cope without full understanding.

As a positive, I have seen many autistic teenagers blossom and flourish with the right handling and encouragement. And what would life be without challenges to meet?

George
 
I have a friend who I have been friends with since I was 11.....48 now. His 1st son was diagnosed with it early on. His son has it pretty severely. The first signs were when he was an infant / baby he had no emotional reaction to stimulus......you couldnt get the big "baby smile" from him no matter what you did. No peek a boo kinda stuff, where they get all excited. If you did the knee bounce thing he didnt laugh or hum like some kids do. Dont fry me if my terms are incorrect.......He told me autism is considered a spectrum disorder......meaning that people can lie anywhere on the spectrum.....on one end of the spectrum it may be unnoticable in everyday life......on the other end of the spectrum are people who can not communicate in the normal way. His son is pretty severe. With help from people who deal with Autism they can communicate with him using a picture book and recently a few words.Autistic kids often times will get "hooked" on certain stimulus. My friends son loves 2 things......#1 swinging in a swing.....we have built him 3 different swings to choose from ......he can wear out a swing in 6 months...lol. And water......the boy LOVES water. Lets just say fortunately there are quite a few rivers and lakes around here to take him boating on. Recently my friends 2nd son has been diagnosed with autism as well.....fortunately he is on the other end of the spectrum from his brother and to people who do not spend alot of time with him he seems "normal".....maybe just a bit odd. The oldest sons name is Jim (not really)....when my friend found out how severely Jim has Autism we had quite a few late night conversations.....uusually involving our other buddy....you probably know him....Jack Daniels. The consensus between us was there is bnothing he could do about curing Jim....these are the cards he has been dealt. The only thing that can be done is we can advocate for Jim and make damn sure that every resource we have available to help....we take advantage of......
Jim recieves services from the County in which he lives, Assistance through medical insurnce, and he attends a school designed for kids with autism. He is 15 now and everyone is very happy that he now uses the bathroom with a bit of help probably 85% of the time. The newest hurdle to deal with.....Jim has to deal with all the same feelings we all dealt with as teenagers.....with alot less social graces.

Sorry if I rambled.....best luck to you and the boy.
 
Write a letter to the local elementary school addressed to the "special education department". Keep a copy and make sure it has the date inside the letter. In this letter have her say "I want my son to be evaluated/tested for possible special education placement". This starts a legal timeline and the child is old enough they have to do some testing and schooling if he qualifies.
Their answer may be to wait and "he will grow out of it". Do not take that as an answer. Keep pushing for extra help. It may be your local school does not have autism classes you may have to contact the county office of education to get him into special classes.
Have him tested for eyesight and hearing by your doctors.
Bill D.
 
Don't wait till the next check up, get on it now. Their is treatment available but it needs to start ASAP.

Moonlight is absolutely right. Start looking as early as possible. I have a good friend with a son with this. One of the biggest problems is parents in denial who delay seeking professional help. Bill S
 
I have a friend who I have been friends with since I was 11.....48 now. His 1st son was diagnosed with it early on. His son has it pretty severely. The first signs were when he was an infant / baby he had no emotional reaction to stimulus......you couldnt get the big "baby smile" from him no matter what you did. No peek a boo kinda stuff, where they get all excited. If you did the knee bounce thing he didnt laugh or hum like some kids do. Dont fry me if my terms are incorrect.......He told me autism is considered a spectrum disorder......meaning that people can lie anywhere on the spectrum.....on one end of the spectrum it may be unnoticable in everyday life......on the other end of the spectrum are people who can not communicate in the normal way. His son is pretty severe. With help from people who deal with Autism they can communicate with him using a picture book and recently a few words.Autistic kids often times will get "hooked" on certain stimulus. My friends son loves 2 things......#1 swinging in a swing.....we have built him 3 different swings to choose from ......he can wear out a swing in 6 months...lol. And water......the boy LOVES water. Lets just say fortunately there are quite a few rivers and lakes around here to take him boating on. Recently my friends 2nd son has been diagnosed with autism as well.....fortunately he is on the other end of the spectrum from his brother and to people who do not spend alot of time with him he seems "normal".....maybe just a bit odd. The oldest sons name is Jim (not really)....when my friend found out how severely Jim has Autism we had quite a few late night conversations.....uusually involving our other buddy....you probably know him....Jack Daniels. The consensus between us was there is bnothing he could do about curing Jim....these are the cards he has been dealt. The only thing that can be done is we can advocate for Jim and make damn sure that every resource we have available to help....we take advantage of......
Jim recieves services from the County in which he lives, Assistance through medical insurnce, and he attends a school designed for kids with autism. He is 15 now and everyone is very happy that he now uses the bathroom with a bit of help probably 85% of the time. The newest hurdle to deal with.....Jim has to deal with all the same feelings we all dealt with as teenagers.....with alot less social graces.

Sorry if I rambled.....best luck to you and the boy.

Not gonna lie to you.....there have been conversations between me and my friend that I am sure neither one of us ever thought we would have. How to deal with Jim as far as puberty issues....how to deal with him ( he is a big strong kid) if / when his frustration boils over....obviously the young man cant be allowed to be violent toward his parents....Hell....my friend stores his hunting rifles in my gun safe for obvious reasons. When the time comes....and it will come......how will Jim do living in an assisted living arrangement? What do we do today to try to make that easier? Obviously as my friend and his wife get older they will become less able to deal with his outburst' . Hopefully your GF's boy does not have autism, and if he does, hopefully it is not as severe. But I think you are correct in talking it through with the GF and getting a professional opinion. My wife and I are Jims guardians should something happen to my friend and his wife.....accepting that responsibility with the seriousness it deserves took many weeks of discussion.
 
In autism the individual becomes extremely self-absorbed to the point of completely ignoring other people and doing what they want without regard to social norms. This can include pathological behaviors like finger flicking and grimacing.

Autism, in my opinion, should not be regarded as a defect, but as an extreme of the mind, like being too tall or short. As such it should not be "treated". The problem with autism is that such people do not interact with others, so there is a tendency to try to control them or punish them for not interacting. Dyslexia is analogous to autism, but noone tries to "treat" them. This mistreatment of autistic people is similar to assuming someone is stupid if they are mute. People hate others who will not talk to them or react to them and this results in drugging such people, putting them under psychological pressure and treating them like they are defective just because will not react. In my view it is completely wrong and unnecessary to treat autistic people this way.

The most important thing to realize is that understanding and reacting are two completely different things. Just because somebody does not answer you, does not mean they don't understand what you said. Austistic children can understand adults just as well as a "normal" or dyslexic child. They just don't respond in the expected way.

The best way to deal with an autistic child is to let him/her do what he/she wants and reduce your expectation of getting a response. Avoid activities that involve complex multi-tasking and focus on step-by-step, linear activities. Do not "talk at" the child, just behave normally, they understand you. You don't need to shout at them or treat them like a retard. They are just as smart as you. Treating them differently or tormenting an autistic child to try to get it to interact with you, will just give the child the idea that something is wrong with them and create emotional problems in them. If you treat them normally, and leave them be, they will grow up fine and figure out their own way in the world.
 
Our grandson is autistic. His mother noticed the developmental problems when he was 1 1/2 to 2 years old. They sought professional help. Some of the treatment was to put him in social situations including hiring kids to play with him, tutoring in areas of defiecency, and others. I am certainly am not an expert on the subject and don't recommend a course of treatment other that seek professional help. This was 16 years ago. Today JD is a junior in college to become a structural engineer and doing quite well.

Tom
 
My partner is autistic to some degree, she also has other similar types of issues. It can be tricky, it can be a problem. I have spent a lot of time working with her on stuff though and its definitely helped, shes now way more out going and will hold a conversation to some degree with other people.

That said, a key parts getting advice as much as you can. Theres no magic drug based fix. Her situation is made far worse by her mother (a special needs paediatric nurse) Being in total denial there’s anything wrong with her own daughter, guess it just hits too close to home. From what i can make out as a kid she was just left to get on with it, which by and large seamed to have involved just letting her play board games and puzzels, no real group based - usual family interactions despite being the middle of 3 sisters. Originaly we met online with the aid of one of her friends. Im the first person in her life thats really tried to help!! Which is kinda sad. Her oldest sister had her down as just useless, the youngest well, i don't think she kinda knew what to do. Dad seamed busy at work - would just get angry with her over anything and everything. When i met her, they pretty much just used her as a house made to look after her dyeing granddad who was a real arse hole too her If he had not already been dieing i would have probably broken the fuckers kneck myself.

You need to be open, you need to talk about it, you need to find solutions. Being embarrassed gets no were, ignoring it - hoping it goes away is a real bad bad plan. Treat it just as you would a problem in this trade, don't make it personal, don't lay blame, just find solutions to the problems as they crop up and its really not then much of a issue, try to ignore it - lay blame and it just reflects on you more than it does them. Like any disability it can be as limiting as you let it. Theres a lot of help available, but it can be a struggle to find at first.

Then there comes the coping strategies, in my case its having her trust me, often doing simple tasks and above all getting her to get use for asking for help when shes stuck. From my perspective its very very strange at times, I can have her running a complex job on a machine, it can be as repetitive as hell, but once she has it mastered shes fine. Anything goes wrong and its a crap shot as to if she notices or if she can work out what to do. At times she very much blue screens and locks up just like a windows PC would.

Last night she decided to clean the kitchen oven, as is typical, the inside of the ovens now spot less, so are 3 of the 4 hobs, the forth one was still filthy - untouched. This seams very typical, she can't keep track of things - plan and carry out tasks. Yet give her something that sets the routine, like a machine that stops when it wants to be emptied - refilled and shes fine. She likes to cook, but whilst great at makeing a cake, use to excell at burning it to literally carbon. A simple timer which she sets that turns the oven off and we now have great cakes :-) Every problem has a solution, some one with autism, won't find that themselves, problem solving if anything seams to be the definition at times of autistic behaviours, they need help finding the solutions to there problems. But once they see it, they can and will use it going forwards.

Other things like fetching things or something as simple as filling a ice cube tray and putting it in the freezer can be a real challenge (she would fill the tray with water then not dare move in case she spilled it). Solution to that ones simple, had a great water fight, learnt spilling water in the middle of summer does not matter - no ones going to be angry and we now buy ice :-) Key thing thats taken me way longer than i ever realised it would is to get her use to the fact its ok to try but fail at something. EG if you have curly hair but use a hair straightener but then go out in the fog its going to be a bad hair day!! Doing that does not make it wrong to try and straighten your hair, just might be better to go for a different style!

Communication can be a struggle too, autistic people by and large exhibit odd - unusual body language. When i originally met her, despite damn near never letting go of me, there was no notion of looking at the person she was speaking too. No notion of maintaining eye contact. Something that back then due to my deafness made holding a conversation even harder. Thankfully though, due to the online dating side and text based chat it really was not much of a obstacle.

The other advice i can give you is that it can vary significantly day to day, as she gets tired the problems very much get worse. Sleep and a good diet defiantly helps. Also it pays to keep interactions kinda simple. IE don't ask a long list of questions at once even if dead simple, one at a time and its no problem, same goes with asking them for things, one thing at a time works way better than asking for a bunch of things at once. Group situations - crowded environments - lots of stimulus at once is a big problem, she will get very lost - confused and eventually scared. That can then result in anger but we have been working on that one too.

IMHO you have a golden opportunity here, you have found it early, you can start finding the solutions to the problems now, you can focus on the problems and help way more than you praphs realise. Just like any disability its only as disabling as you let it be. You can greatly influence that way more going forwards than you ever realise. Autistic people are often not thick, they just have issues with certain trains of thought - thought processors.

My partner these days is a very very different person to the one i met, shes got some degree of confidence, she has a full time job (took a few, but finally got one were shes told what to do all the time and its been a steady 5+ years of employment) Currently were trying to decide about starting a family, big part of that though is trying to work out some of the problems ahead of time to make it cop-able for both of us. Yeah its going to be a struggle, but we both want it so it probably will happen in time. Remember, the futures what you help make it for the kid, not just a diagnosis. If your partner is open to this, can take it on - get over any feelings of blame the skys the limit, but i can't stress enough how much of its end effects on the kids life is down to you guys and your attitudes to it now. Autism in some was is not the problem, its how society treats that label!
 
Get this book, read it. Have your girlfriend read it. It's what was recommended to me when my shrink told me I was on the spectrum.

At the same time, there are plenty of other things that LOOK like autism. Ok, maybe not plenty...but a couple. Sensory Processing Disorder comes to mind.

Asperger's Syndrome: A Guide for Parents and Professionals
Tony Attwood, Lorna Wing, Lorna Wing
Kindle Edition
 
Wow. A lot of good solid replies here... if it really turns out to be autism... and I am not going to suggest it not be looked into. But the age, almost three, brought the following to mind, which I will relate.

My wife recently retired after providing early childhood education, specifically ages 3-6, as a Montessori Directress (teacher). Just about every year she would have a "challenging" child. Sometimes she would suspect a problem and work to have the child evaluated; other times the child would be transferred into her room because some other teacher, quire frankly, couldn't handle the child. Ostensibly this was because she tended to run a more structured classroom than the "true Montessorians" who were content to let a child pour water every day for nine months if that is what the child wanted to do; my wife felt it was part of the role of the directress to direct a child to an ever broadening array of experiences. At times I felt that she was given these difficult children as punishment after a run-in with the administration, but it made no difference, she always viewed it as a challenge.

Because this school was a for profit organization, they were very leery of of making any official judgement of their own, and would suggest that the parents contact their local public school district for help. I believe they could also request an evaluation through the state Dept. of Children and Family Services. These social workers were good at hanging a bunch of letters on the "disorder" (ADD, AHAD, whatever the flavor of the day was) because having children with learning disabilities is good for the school district - it brings additional Federal funds. Rarely would they actually call it autism, perhaps because they really weren't competent to make that determination. The school administration would also encourage the parents to obtain a private evaluation, but those were typically confidential between the parents and their doctor, and I don't think that any parent ever revealed what the determination was.

It didn't make any difference to my wife; she had no special training to deal with this, and as far as she was concerned, if the parents chose to leave the child in her room, it was her job to try and find a way to reach the child.

And you know what? Nine times out of ten, it appeared that it was just some delay in development of social skills, or cognitive ability, and after a year or two things would just "click" and then the child was better able to make his way, so to speak. Some were still quirky personalities, some were extremely bright, but I can only think of once in twenty years that a child was asked to leave the school, after he injured another child (during the extended day care, not on my wife's watch).

My point is, with support and nurturing, almost all children can find their way in the world. Be supportive.

Good luck,

Dennis
 
So my previous answer was purely informational. For the more personal side.

Yes, it is a spectrum. I happen to be very high functioning. If her child has made it to three without it being blatantly apparent that he is autistic, he's likely pretty high functioning as well.

For me, when I'm under stress, I tend to become "more autistic"...which is pretty common. Right now, it would be difficult for a shrink to recognize my condition.

What I will say is that intervention, any intervention, is going to be nothing but beneficial. People are afraid of their child being "labeled"...I consider that bullshit. I was NOT labeled, and after ten years of college, I REALLY wish I would have been. It would have saved me a lot of really hard lessons.

I could tell you so much more...like how I eat the same thing every day until it starts to make me sick. How I obsess about the same things, over and over...with really rigid thinking. How I love sleeping under a million blankets (if he's autistic, get him a weighted blanket...if you or your girlfriend sews, PM me, I can mail you some nylon pellets to make your own, as they are expensive). How I have REALLY odd interests and "collections".

As for the violent side of it. Outbursts can be violent, but it's not the kind of violence that you lock up rifles for. Autism is said to lack empathy. Current research questions this, but what I can tell you is that empathy is difficult. A lack of empathy makes compassion difficult. A lack of compassion makes love difficult. A lack of these traits makes for social awkwardness...and makes it difficult to connect with people. This makes it less likely that you'll ever understand empathy. This is why (in my opinion), people associate autism with violence.

As for the outbursts...think of it this way. You are sitting in a busy city train terminal, activity all around you. You are high on just enough weed to make you paranoid. You haven't slept in 48 hours, and You just drank three pots of coffee, so you are jittery and you have to piss. Oh, you've also got the trots. Now, talk to that nice police officer and tell him about your childhood, while all you can think about is the bag of weed in your pocket and trying to determine if the overhead speaker is announcing your train arriving...all the while there is a mime trying to get out of a box while a drummer drums and a fiddler plays devil went down to georgia. That's sensory overload, and that's the core of what every single day feels like when you are autistic....the outbursts are what happen when you just can't take the shit anymore.

So what do you do? Low lighting, low deep noise, and deep pressure to the joints.

Just remember one thing....You are your child's advocate. It is YOUR job to prepare them to be as functional as they possibly can be, to be respectful, but most of all, find joy in life.

Now, introduce him to Thomas the Train.
 
I wouldn't be surprised if testing showed that at least helf a dozen of my close friends and myself are on the "spectrum". We've all talked about it. Friends have a son who is officially. He's exactly like his father and grandfather.

Nobody knows your own kid like you do. Dive into it and do the best you can for them.
 
Yeah, a lot of this stuff seams to run in family’s, i would not want to say its just genetic, but i think it could well be, also undoubtedly some of its learned behaviours too. In close nit family’s its easy to end up in as situation were the kid sees little of the outside world, hence ends up simply replicating there parents actions.

Certainly in my partners case it was not till she left home that some of thoes behaviours could be "worked on".

In some ways as a parent you have it a lot easier than a partner, imagine trying to sit there with her at the doctors explaining the problems your having, the problems she faces with a doctor thats completely incompetent at diagnosing this stuff coupled with the partner having a good day! It was arguably the stupidest i have ever been made to look! Im sitting there stating i think my partners semi nuts, shes acting totaly normal describing the problems! Compare that with when we were speaking to the mental health nurse and its a night and day difference. Someone that understands the problem can be a great help. As her partner, its hard because im often having to play the role of both partner and carer. Also anyone that listens in on our conversations often thinks were abrupt to one another. In my partners case adding - explaining things more can actually make her more lost at times, hence keeping things short really helps.

Official diagnosis or not is one thing, but its more about finding help that matters. These days a official diagnosis unlocks a lot of help. But it also brings the reality to the front, there’s then no denying it, for some (like my partners family) thats a far bigger issue.

Above all don't let this rule the kids life, remember, child hood should be a fun time, make it so. Just realise there going to need some different strategies with some things as they grow up. Some mile stones are going to be far harder for them to reach. But they very much can do almost anything they set there mind on with time, with a bit of help and some perseverance.
 








 
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