Autism thread

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For me, autism has always been an issue that I could get self-righteously worked up over, with the whole celebrity-fueled, vaccine link controversy. Sort of like how I argue about alternative medicine or intelligent design or when I root for a particular football team... things that are fun to get passionate about because they hardly affect my life at all.

Now though, it's hitting close to home as my almost 1.5 year old son is falling behind developmentally and there's a long list of "red flags" for some kind of autistic spectrum disorder. I'm starting this painfully drawn out process of evaluation and (hopefully) treatment, with a very uncertain future for all involved. Everything I'm reading says early, "intensive" intervention is key to a good outcome, but what exactly does that mean and how do I get it?

And on the other hand there are plenty of family members suggesting we're overreacting and worrying over nothing. Just give it time and everything will come out all right.

Then I read about a whole group of people who seem to be against working toward a cure altogether. They believe that labels like "autistic" are harmful. We should all just learn to appreciate and value everyone for who they are, instead of trying to fix them when they aren't broken. I can sympathize with this viewpoint, especially now that it's so personal, but don't think I can follow it myself.

Autism is all over the news with prevalence rates now being estimated at 1 in 88 people (1 in 54 boys!). Why so high now? Where the heck are all these people anyway? And there's also the controversy of changing the diagnostic criteria, which could affect reimbursement for services among other things.

Just thought I'd see if anyone has any thoughts about all this as I struggle to get mine together.

Our daughter is autistic. She is 8 now, still non-verbal and still in diapers. We figured it out when she was the same age as your son. The first place you need to go is a developmental pediatrician and get a referral. Early intervention is key.

I think it's a shame that people would say to ignore it. It is obvious from those that have broken through and are now verbal that things are not right in there. We owe them comfort and love while understanding what they may be dealing with.

Also, beware the trap that parents of autistics often get into; you don't have to try everything. You can throw a lot of $$ at a bunch of solutions that may not work. Do the best you can and don't feel guilty if you can't try everything.

We have had luck with ABA services provided by ACES. But, I'm not sure what is available in Alabama. Do your research for your location and be knowledgeable about what is out there. The worst thing is to be uninformed when the "experts" start giving you perfect solutions.

Also, if he is autistic, depending where he is in the spectrum, be ready for a long road. Have an honest talk with your spouse. Autism is one of the hardest things on marriage if you can't work it out. Decide now that you are going to stick through it together and figure out a way to make time for each other. Since it can be all consuming, I think couples end up forgetting to nurture their own marriage and in the end the child suffers the consequences. Respite care of some sort can help a ton here.

Anyway, feel free to PM me or ask questions here. My wife is the real expert so I may defer to her on the harder questions.

They are beautiful kids, and raising her has changed me in ways I'd never have otherwise.

EDIT: I neglected to say that despite the fact she is still in diapers and nonverbal, she has made amazing progress over the years that I truly believe would not have happened without intensive intervention early on... and a lot of love and patience

When my wife and I started looking into home schooling our children and considering her particular needs, we attended a conference for home schooling families who had special needs kids. We didn't define our kids this way and the one who does fall into the autism spectrum is definitely toward the less severe side of things. However, we wanted to see learning from this different perspective.

Our eyes were opened. We were amazed by the incredible amount of different ways to teach things depending on how a child learns best. There were passionate speeches which illustrated how much our understanding of the human brain has grown and how our knowledge continues growing even faster than before. It truly felt like there was help out there from every direction, and all one had to do was be willing to look for it. (Since then, we have found that this is more true than we imagined.)

The one speech which stood out above all the rest simply stated that every person is somewhere on the spectrum of brain disorder. Even within named sections of that spectrum, all are unique individuals who will fit into that category in some ways but not in others. The labels are there so that our social systems can adequately classify and address what they can, but the parents are there to identify, preserve, and nurture the unique gifts that these so-called disorders bring with them.

No matter what happens, please know that the amount of support out there is tremendous and still growing. Your son will be uniquely gifted regardless of the challenges that you will face together. With every struggle, his life and yours will have greater meaning and love.

For now, enjoy your son as you learn more about him. I hope you are able to give yourself time to breathe and live. It's the constant soft breezes that get the boat to where it's going. Your son will be his own captain, but you are a big part of that wind which will power him on his journey through life. Have patience and pace yourself. Smile and find reasons to be thankful for what you have even when times get rough. You can do it!

While I can't speak specifically to what's out there for Autism spectrum disorders, I'm fairly well versed in Alabama's Early Intervention services. IIRC(it's been 3 years now) it's a statewide program. My middle daughter(of 3) was born with complete Agenesis of the Corpus Callosum, which can have a fairly broad spectrum of outcomes similar to Autism. In both cases, EI is absolutely key. While at this stage there's really no telling how things will work out, I'll echo the sentiments here; there are times when life is rough, really rough. There will be times when you may feel like you've failed, that nothing you're trying works. All I can say from my experiences with my daughter is that you've got to find ways to make it through those times. Keep working with them however you can, because as you do so, they'll hit milestones in their own ways and in their own times and being able to watch them struggle and grow and develop, well, that makes it all worth while.

There were two recent studies done that identified [url=http://arstechnica.com/science/news/... 1,000 genes where mutations can cause autism[url], and, more importantly, that it isn't a single disorder, but the name we give a set of behaviors and tendencies that can be caused by many different things. They also support the idea that the "rise in numbers" isn't just due to better diagnoses, but possibly due to people being older when they father children. They generally found that older fathers passed on more genetic mutations than younger fathers.

Wanted to break up the response.

gewy wrote:

Autism is all over the news with prevalence rates now being estimated at 1 in 88 people (1 in 54 boys!). Why so high now? Where the heck are all these people anyway? And there's also the controversy of changing the diagnostic criteria, which could affect reimbursement for services among other things.

There's lots of speculation about these things. Is there an actual reason for increased autism rates? Are we now seeing the ripple effects from pesticides, toxins, etc. whose danger was not known 50 years ago but have manifested in the newest generation? Is it simply that diagnosis has gotten better and autism has always been around but not known about?

These questions will keep you up at night. One question that kept me up at night for the first year after his diagnosis was, "Was it something we did?". Did I use plastic with BPA to store his baby food? Did the paint on the radiators in our old apartment have lead in it? I used to put my iPhone near his crib at night with a wave machine playing...did the radiation that cell phones emit cause this? You'll drive yourself crazy trying to answer these questions and even if you could answer it, it will not change your sons autism. Your efforts and energy are best spent helping him now and finding ways to make the rest of his life better.

As for reimbursement for services, yes this could change. This is why it's important to get a diagnosis ASAP. Get that process started. If your pediatrician will not give a referral to a pediatric neurologist or will not give the autism diagnosis, get a new pediatrician.

You're also going to start hearing more and more about biological treatments, chelation, and GF/CF diets. It's entirely up to you what path you take but I would advise against these until behavioral therapy is utilized. What's that saying? "Medicine that works is called Medicine." Be wary of holistic, homeopathic, biological cocktails, and "natural" treatments.

Thanks for all the insight and suggestions. The killer thing for me will be the uncertainty involved, with a tremendous range of outcomes. I'll probably be a nervous wreck off and on for the foreseeable future.

State Early Intervention is already on board and the home therapy will start soon. I'm not sure it's going to be sufficient though (2x a month was what they told me) and I'll probably be looking at additional therapy once all these evaluation appointments get done in the next few weeks/months.

FSeven wrote:

You're also going to start hearing more and more about biological treatments, chelation, and GF/CF diets. It's entirely up to you what path you take but I would advise against these until behavioral therapy is utilized. What's that saying? "Medicine that works is called Medicine." Be wary of holistic, homeopathic, biological cocktails, and "natural" treatments.

No worries there... I'm firmly skeptical of all that stuff. I will say though, that this experience has made me a bit more sympathetic to the desperate need for some parents to keep looking for answers and things they have some control over, even if it's misguided.

Super cute son, btw.

You'd be surprised at the progress you can make even with just a couple visits a month. I know my daughter's done fairly well. And even though she's not autism spectrum, I'll throw a photo out anyway:

IMAGE(http://sphotos.xx.fbcdn.net/hphotos-ash2/148188_10150309711240262_530240261_15770204_315618_n.jpg)

I took my daughter in to get tested at about a year. She was fine physically, but didn't talk or have much eye contact/interaction. She just watched the world quietly and didn't really cry much. They said she was delayed and it could be autism, but we should wait and retest her. She didn't start talking until about 2 and even then, she was way behind her peers.

Now, at 13, she is two years ahead in math and carries a 4.0. Early delays aren't always an indicator of future achievement.

gewy wrote:

State Early Intervention is already on board and the home therapy will start soon. I'm not sure it's going to be sufficient though (2x a month was what they told me) and I'll probably be looking at additional therapy once all these evaluation appointments get done in the next few weeks/months.

Does EIP end at 3 years old in Alabama like it does in NJ? This was a major factor in us insisting that he get as much therapy as we could afford. You know your son. If you think he would benefit from more than 2 times a month, insist on it. Demand a re-evaluation. I'm not sure about Alabama but in NJ you have a right to appeal any decision you do not agree with.

gewy wrote:

No worries there... I'm firmly skeptical of all that stuff. I will say though, that this experience has made me a bit more sympathetic to the desperate need for some parents to keep looking for answers and things they have some control over, even if it's misguided.

I agree on the sympathy but it makes me incredibly angry at the people who would seek to prey on the desperation of parents by offering snake oils and magic elixirs.

For instance, I recently subscribed to an Autism magazine that I didn't know was covertly funded by Nu-World Foods. What had me questioning it was the most recent issue that had a 4 page article from Andrew Wakefield. I was irate.

Your daughter is a cutie Anime.

peacensunshine wrote:

I took my daughter in to get tested at about a year. She was fine physically, but didn't talk or have much eye contact/interaction. She just watched the world quietly and didn't really cry much. They said she was delayed and it could be autism, but we should wait and retest her. She didn't start talking until about 2 and even then, she was way behind her peers.

Now, at 13, she is two years ahead in math and carries a 4.0. Early delays aren't always an indicator of future achievement.

I similarly did something like that with my son. I'd spent way too much time reading parenting books and blogs telling me "by age X, baby should have done Y". Which is not to suggest that your instincts are wrong, or that testing shouldn't be done, but I think it's also common for parents to worry that something is wrong, when certain self-imposed targets are missed.

But, as other Gwjrs have mentioned, early testing and early intervention is key. My best friend had her son tested, and they found out that he was almost deaf from an ear canal block. Once it was cleared, he was talking up a storm, and his diction improved almost daily. Without testing, it could have become permanent damage.

We have 3 sets of friends with differently diagnosed, but all within autism/aspergers parameters, children. The parents who recognized it and fought to get their kids extra help and resources are seeing much better results now that the boys are between 8 and 10, than are the parents who refuse to believe that their child needs extra services, and that he'll just "grow out of it, it's a stage".

In any case, no matter what the results, right now, while you're waiting for tests and then results, I remember that feeling of dread that is a stomach-tightening exercise in stress. As insane as this sounds, you do yourself and everyone in your house to recognize that even in the worst case scenario, there is help, and there is support, and friends and family will be there, even if it's just via a friendly website. If you can shake off the fear and the stress, and realize that you can't do anything until you have a data set from which to make decisions, the next couple of weeks will be a lot easier on all of y'all. Hugs from the internets!

On the banks of the Seine when Ellyn was 3:

IMAGE(https://lh3.googleusercontent.com/-lsYjTMqx9Ao/RqZWcluvPFI/AAAAAAAAAKY/xZzJPclYodY/s937/DSC02407.JPG)

Thumbs Up:

IMAGE(https://lh6.googleusercontent.com/-XY0F_3Whhf0/RqZWwluvPOI/AAAAAAAAALg/tRLm57ea0GU/s703/DSC02458.JPG)

London:

IMAGE(https://lh3.googleusercontent.com/-OZZJnCFhrG4/Rq5XpluvPzI/AAAAAAAAAQM/TfnhKoaQ96U/s937/DSC02732.JPG)

Monterey, age 6:

IMAGE(https://lh4.googleusercontent.com/-And3uVIG4jY/S5LoNz_kJ0I/AAAAAAAABHY/8nnbcaLq3l4/s640/iphone_photo.jpg)

A very recent pic on my wife's blog about our Elly, she's is getting tall!:

A Peek at Boo

Stengah wrote:

They also support the idea that the "rise in numbers" isn't just due to better diagnoses, but possibly due to people being older when they father children. They generally found that older fathers passed on more genetic mutations than younger fathers.

I am fairly confident (more so every day) that I have an extremely mild form of autism and from what I can piece together from my dad he might have as well. I've often wondered why I'm the only sibling in my family with issues and that might explain it. I'm 6 years younger than my next youngest sibling.

Where in Alabama, gewy? Both my sister and my sister-in-law work at an autism clinic in Huntsville. I could see if they want to talk to you if you need.

gewy wrote:

Autism is all over the news with prevalence rates now being estimated at 1 in 88 people (1 in 54 boys!). Why so high now? Where the heck are all these people anyway? And there's also the controversy of changing the diagnostic criteria, which could affect reimbursement for services among other things.

My perspective is close, but outside, so it's not as relevant as all the personal parental experiences here--I only worked with autistic kids, much older than any of the kids here, so take it for what it's worth. But, by nature of the disorder being a spectrum, it seems very easy to misdiagnose and over-diagnose, and also to perceive there has been a misdiagnosis when it comes later in life. There are the very clear cases, like the kid who insisted on wearing his winter parka in July, but there's a big grey area where it could be mild autism, oppositional defiant, Tourette's, or just oddness (this was, of course, exacerbated in my experience by the population I dealt with, which often had other issues muddying the waters, like PTSD, fetal alcohol, and a whole host of factors I'm going to venture none of you fine people need to consider). Like I said, I was dealing with teenagers, but I'd say act on the info you have, be ready for it to change.

I exist in the spectrum of it.

SixteenBlue wrote:
Stengah wrote:

They also support the idea that the "rise in numbers" isn't just due to better diagnoses, but possibly due to people being older when they father children. They generally found that older fathers passed on more genetic mutations than younger fathers.

I am fairly confident (more so every day) that I have an extremely mild form of autism and from what I can piece together from my dad he might have as well. I've often wondered why I'm the only sibling in my family with issues and that might explain it. I'm 6 years younger than my next youngest sibling.

Would anyone care to share:

-If you are autistic, what age was your father when you were conceived?
-If you are the parent of a child who is autistic, what age were you when you conceived that child?

I was 35, my wife was 33 when my son was conceived.

She's pregnant with baby #2, due in November, which means I was 37 and she 35 when this child was conceived.

Just curious what the small GWJer sampling looks like in regards to the "older father = better chance of autistic child" theory.

My father was 33.

I'm not officially diagnosed though, if that counts for anything. I essentially became aware of the possibility I might have Asperger Syndrome a year or two ago and did a lot of research on my own. If I do have it it's very mild, for sure. There are many more signs that yes than signs that say no though.

35 years old at the time of birth.

My father was 25. (I am on the spectrum.)
I was 29. (One of my children is also.)

It certainly is a wide spectrum. I can't ever imagine Ellyn posting on a forum or even speaking a sentence.

I was 33 when Ellyn was conceived, but 37 when my completely neurotypical son was conceived...same mother who is 4 years younger than me.

It warms my heart to see how mature and supportive all of you are. I have not dealt with autism first hand, and have the utmost respect for all of you who have. I'm curious if any of you have "played" the interactive story/game To the Moon. One of its primary themes is dealing with Asberger's.

It was my favorite game of 2011 and impacted me deeply. I would like to know just how well it approaches the subject from someone who has dealt with it first hand. I frequented the freebird games forums for a bit after it came out, and there were a few people who had or had dealt with autism and they were very appreciative.

If any of you would like to try it, I would be glad to gift it to you. Just send me a PM.

To The Moon has been on my to play list since it came out but I haven't yet.

MisterStatic wrote:

It certainly is a wide spectrum. I can't ever imagine Ellyn posting on a forum or even speaking a sentence.

There are times (like this) when I'm not comfortable saying I'm on the spectrum for this very reason.

SixteenBlue wrote:

To The Moon has been on my to play list since it came out but I haven't yet.

Maybe now would be an appropriate time to play it? It takes about 2-3 hours. PM me with an email if you need a copy. Since there were only 10-20 of us on GWJ who played it, the conversation was good but limited in the To the Moon thread. I would love to gift some copies to people who haven't played it as I think Kan Gao deserves more than the 10 bucks (and 20 bucks for a couple gifts) that I paid for the game.

I'm on the spectrum(Asperger's); Mom turned 20 6 months after I was born, Dad was a little older, although I'm not entirely sure as he wasn't really part of my life.

edit - To the Moon? I hadn't heard of it, but I might have to give that a whirl.

AnimeJ wrote:

I'm on the spectrum(Asperger's); Mom turned 20 6 months after I was born, Dad was a little older, although I'm not entirely sure as he wasn't really part of my life.

edit - To the Moon? I hadn't heard of it, but I might have to give that a whirl.

Check the thread for some trailers and whatnot. Spoilers are tagged very well throughout. You can download and play the game for an hour for free. If you need a full copy and are too lazy to buy, PM me an email address.

It received absurdly positive reviews from most places (RPS being a big one). There are a few people with whom it doesn't jive (Minarchist for example), but I think it was a very valuable use of time for most people.

I hadn't cried since I was about 13 until I played this game. That means it affected me emotionally more than Up! did.

My 5 year old (soon to be 6 in a few months) cousin is autistic. I think the warning flags really went up about 2 years ago, when social skills and talking were concepts he just couldn't grasp. He has now been working with a teacher that comes to their house every week for the last year, and it's absolutely amazing how he has blossomed. My aunt is a wonderful woman, and I admire her strength through all of this, as she started out as an overly worrisome first time mother. While he still has a hard time expressing emotions and can often melt down into explosive tantrums, both my aunt and uncle have done wonderfully, and it really shows.
I can't really give any helpful info that hasn't already been given countless times in this thread, but I wish you the best, and you obviously have plenty of people here in goodjerdom that are willing to extend a helpful hand and pass on their wisdom.

tuffalobuffalo wrote:

To the Moon

Hm, I've never heard of it until now, but I definitely need to check it out sometime!

tuffalobuffalo wrote:
SixteenBlue wrote:

To The Moon has been on my to play list since it came out but I haven't yet.

Maybe now would be an appropriate time to play it? It takes about 2-3 hours. PM me with an email if you need a copy. Since there were only 10-20 of us on GWJ who played it, the conversation was good but limited in the To the Moon thread. I would love to gift some copies to people who haven't played it as I think Kan Gao deserves more than the 10 bucks (and 20 bucks for a couple gifts) that I paid for the game.

I appreciate the offer but I'll pick it up myself. You're right though, now is an appropriate time to play it.

One interesting study I saw recently suggests that infant boys with autistic disorders grow significantly bigger than their non-autistic counterparts and the biggest ones tended to be lower functioning, at least at 2 years. They think it might be due to some kind of dysregulation of growth throughout the body (including the brain).

This makes me nervous since our boy's height is pretty much off the chart (99th percentile) for his age. I gotta stop reading about all this stuff. It's just gonna make me more of a nervous wreck.

I just want to chip in and say that I didn't speak until quite late as a toddler either. So while that may be an indicator, it isn't a guarantee.

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