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I couldn't get through the whole article... Partially because I am working and partially because the issue of Autism is difficult for me to read about.

My daughter was diagnosed at 16 months. She is now 20 months, so this is all very new to us.

The one thing I have learned is that if you have met one person with Autism then you have met one person with Autism. It's important to realize that Autism is a spectrum and therefore the needs of an individual can be very different and varied.

The other thing I would like people who are fortunate enough to not have encountered Autism is that early and intense therapy is ABSOLUTELY crucial. If you are a parent and suspect something, DO NOT hesitate. If you see legislation that adds support for young children then support it. In the long run society will save a lot more money and lives if we address this early rather than later.

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My daughter just turned 11, and she was diagnosed just after she turned 2. Catching it at 16 months is a big advantage in the long run. A lot can change over time, and we've seen kids lose their diagnosis or have it altered.

If you aren't yet involved with any parent groups, consider that option. I've found the community to be warm, helpful, and willing to share information or services, resources, programs, etc. Good luck to you and your daughter.

We're fortunate that we have the support (family and education) to allow us to explore opportunities.

We are very engaged with the community and are engaged in every therapy available to us.

My mind though, when not consumed with doing all we can for my daughter, drifts to those parents who don't have families to help. Parents who can't afford to have one parents stay at home (my wife left her career as a Pharmacist, a big part of who she is). It's crushing to think that there are kids who could lose a diagnosis if they had the opportunities my child has. My daughter spends 30 hours a week in various therapies between speech, OT, PT and ABA. She's making amazing progress... but how do you scale that for a general population?

My perspective on society and the services that ought to be a right has changed drastically. It's a shame it took something like this for me to see it.

Just wanted to encourage you that autists can still have very meaningful and fulfilling lives... i am proof of that.

http://john.do/autism/

i mean... shit... even this autistic adult got on the front page of hacker news! fuck yeah.

http://john.do/fp-hn/

and i did it twice in the same week...

Thank you. This was a great read.

I just read your post, and though it may be hard sometimes just remember we are all unique and you shouldn't use autism to define you as a person. A lot of intelligent people experience these symptoms and psychs are always looking for your weaknesses to put labels on and prescribe pills for (I've been diagnosed differently 3 times, once with Aspergers). You are a smart individual, you don't need Aspergers to tell you that. Good read nonetheless, thank you for sharing.

EDIT: changed some wording

I know some people who consider it an important part of their identity - because, as exch says upthread, "All the weird and inexplicable things I saw in my past, suddenly fit. Like a giant puzzle you've been trying to solve for 30 years and in a matter of weeks, every piece just falls into place."

I also know plenty of people who're diagnosed and consider it one fact among many and not worth much mention.

So I'm not sure "shouldn't" is quite accurate.

Maybe "even if autism is, to you, an important part of your identity, remember that a diagnosis is meant to enable you instead of restrict you" better expresses the meaning I -think- the rest of what you're saying implies you were aiming for?

On a related note, here is an essay written by a high-functioning autistic person which I read once and found illuminating on the identity issue:

https://www.fysh.org/~zefram/allism/allism_intro.txt

Can recommend. He and I have worked together on many open source projects, and drunk beer together.

He was one of the people I was thinking of as "part of identity".

I am not sure where you lay on the spectrum but you appear to be very high functioning and possible only have Aspergers, which is rumored to lose specification in the Autism spectrum in the next DSM.

DSM-IV came out over 20 years ago (revised in 2000) and DSM-V came out in 2013. I don't think we are expecting a new DSM for some time now.

Under DSM-V, Asperger's was rolled into ASD and lost it's classification as a subcategory. That is how I understand it.

As a fellow, certified autist (High Functioning Autism diagnosis since 2009), this article resonates with me on many points.

Since the diagnosis, my life has improved 100 fold. Not so much because I got go to some courses and group meetings about the subject, but because I was finally able to understand who I was and why. All the weird and inexplicable things I saw in my past, suddenly fit. Like a giant puzzle you've been trying to solve for 30 years and in a matter of weeks, every piece just falls into place.

And more importantly, being able to explain to others who I am and not feeling the need to try to 'fit in'. I learned it is perfectly OK to be me and this almost solely improved my mood, energy and ability to function in daily life.

For those interested, I've also written up a few articles on my experiences in various daily things:

- https://jteeuwen.nl/autism/hfa.html - https://jteeuwen.nl/autism/a_night_on_the_town.html - https://jteeuwen.nl/autism/phonecall.html

What sorts of therapy are useful for a child at that age?

They usually start with ABA (applied behavior analysis) and perhaps occupational therapy and speech therapy. It's fairly intensive at an early age because early intervention can make a huge difference. Therapists are coming in and out of your house or child's classroom a few times a day.

The key is that < 3 years your brain has a lot of elasticity. If you are able to address the social and joint attention skills early it can make all the difference. Rather than training a child you can actually make it natural for them.

Even after 3 there is a tremendous value to these therapies... it's never too late.

My wife is BCBA certified. She told me once that for certain kids, early therapy can make the difference between a kid going to University and a kid having to be institutionalized.

Depends on their deficiency. Most the time they have several delays developmentally.

Our daughter has difficulty in path planning (fine motor). She was delayed walking and as a result had low muscle tone. Her attention (eye contact, joint attention) was also poor, which made learning other skills difficult. Since very young she would hyper focus on objects like strings and would tantrum when you try to transition her to new task or object. The objects were usually not appropriate or typical and her interaction with them was not considered typical (repetitive behavior).

She now walks, has great eye contact and joint attention and is learning new words everyday (though still has some speech issues). She also plays more creatively and appropriately with toys... it's really opened up so much for her.

Mostly these are play based therapies. The difference is the way that tasks are broken down. For a lot of kids you have to master and work on REALLY basic steps for a long time before moving to even basic things (like stacking rings or requesting an object).

Any kid would benefit from these therapies, there is no magic to them. It's time and observation. We set goals for her then work with specialists to break down the operations and work with her to master fundamentals. Each new skill tends to unlock all sorts of other skills.

ABA is a trial based therapy that has a lot of good and bad information out there about it. It is basically what I just described but in a much more structured and documented manner. It's one of the more researched methods of treatment and has been proven to be highly effective. It's again tailored to the child, so there is no good way of describing other than to say that it emphasizes mastery of skills, errorless learning (no negative responses for wrong behavior) and intense hours (some kids do 40 hours of ABA a week alone).

As I mentioned, each kid really has their own set of issues, so it's tough to say what will work for each kid.

I read a few Behaviorist books when she was diagnosed. A lot of the therapies/techniques are really just good parenting advice.

Have you read any of the info looking at the relation between the microbiome of children's gut and autism?

The fact that you've been downvoted is one of the main issues with the understanding of autism by the world at large (those not in the autism community). There is considerable research into the connection between gastrointestinal issues and autism, which co-exist in many cases. Those that look to things such as diet are sometimes ridiculed, but if there is a significant difference between the gut in ASD kids and the gut of 'neurotypical' kids, why wouldn't diet be considered as an option?

A few articles on the topic might help for anyone unfamiliar that wants to learn more.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3564498/ http://www.scientificamerican.com/article/gut-bacteria-may-p... http://news.nationalgeographic.com/news/2014/11/141114-autis...

Just came back and a bit surprised at the downvotes... but that's ok.

I don't know a huge amount about the connection, but I know many autistic kids have GI issues (loose stools) and this has many families considering diet changes as a treatment, so to speak.

If you look through my history, you will see that I actually donate stool for stool transplants. My understanding of the connection (or what the hypothesis is) is that the flora of children doesn't adjust the same in autistic kids as it does in others. We naturally have a level of Clostridia bugs in our guts when we are born and they typically taper off at around 10 months or so. It's believed that in some kids, it doesn't taper off and continues to grow in their gut. As we know, Clostridia bacteria are great at producing toxins (botulism, c. diff toxin, GAS gangrene) and it's believed the Clostridia that are in the babies guts are producing neurotoxins that produce these autism symptoms. We've completed transplants on a few autistic kids with mixed results (younger kids seem to do better than older kids, the thinking is that the older you get, the more damage the neurotoxins have done).

As many have pointed out, autism is still such a new diagnosis, and it's truly a spectrum of symptoms, but also a spectrum of causes. Therefore a stool transplant might not work for every child.

There are many studies about autism and GI issues over several years. Parents of ASD children take heat for trying various things to help their kids, including diets. There are several diets that have helped some kids, but as you wrote autism is a wide spectrum and no two may react the same.

The biomedical side of autism is often dismissed, and likely misunderstood, which I think explains the downvotes. Spending time with hundreds of children with autism, and you start to hear similar complaints and issues. Many of these kids are sick.

The microbiome of the gut is like the new frontier of medicine. It's currently very en vogue and lot's of interesting research coming out. For example, the link between bacteria population in your gut and obesity.

Diet can drastically alter these populations, and therefore when parents adjust diets (remove gluten, remove dairy etc etc) they are actually adjusting the gut flora.

The microbiome may be new, but treating children with behavioral issues with dietary intervention goes back 100 years (with varying levels of success).

The GFCF diet (and others) seems to get criticized because parental reporting doesn't seem to match scientific studies. But the anecdotal evidence is overwhelming. The Autism Research Institute has surveyed thousands of parents about diet and results, and some of the diets have a high success rate with helping some symptoms.

3 year girl in my family had serious gastrointestinal issues. She suffered on the daily basis and it made contact and therapy just much much harder. Diet adjustment was huge win. It does not cure but enables development.

I did not downvote (don't even have the ability).

Our daughter had severe GERD at a young age, she would be screaming through the night in pain. Apparently GERD and gastro issues are somewhat typical of kids with ASD.

That being said I did a lot of reading on effective treatments. There's absolutely no shortage of parents seeing results with dietary changes and it's a fascinating area. Unfortunately I have not found any studies that conclusively make any link that we feel comfortable implementing.

Gluten intolerance and dairy intolerance run in my family. For the last 4 months we have cut out gluten. The reason is that it seems to anecdotally have a high link to symptoms and it's super easy to eliminate (comparatively).

Our Pediatrician (who is well versed on this sort of thing) expressed concerns that often the strict diets bring a fair amount of stress to both the parents and child. ASD kids often have feeding issues already... I know several who only eat 1 or 2 types of foods. She did not feel comfortable based on the research recommending any drastic change.

On a side note... there are a TON of well meaning and desperate parents out there. There are also TONs of unscrupulous companies who will make all sorts of claims. One of my biggest concerns is with all the poorly researched vitamin and medical interventions. I am not stupid enough to dismiss the entire field as without merit... but I have seen some pretty awful claims and therapies that have huge risk and almost no factual evidence. It's a scary landscape out there if you are uneducated and desperate.

You don't have to do a ton of searching to find some really scary interventions out there being done on very young children.

Regarding diet and stress - we started with diet about seven years ago. She was a very picky eater and we kept the snacks she liked in one cabinet, and when she wanted something she would come take your hand and drag you to the cabinet. If you asked her what she wanted, she'd take your hand and place it on the item (no pointing, no grabbing it on her own).

The day we implemented the diet, I took her to the cabinet and opened it up. It was empty but for a few things she still could have, and we eventually filled it with things she was allowed.

Flash forward to today, and her favorite foods are almost entirely vegetables and meats. She is very restricted - no dairy, gluten, soy, corn, sugar, any grains, and little processed food overall. She has been sick (cold) once in the past three years and attends elementary school.

The stress of a child not sleeping for years far outweighs the stress of meal planning and preparation, at least in my family (wife is at home).

I'm not a doctor (if that wasn't obvious already), but diet worked for us and she quickly realized that she would have to eat from choices we provided. There was no more than maybe a day of any negativity about it from her. Her diet now is incredibly healthy, and my wife is creative to make things that are safe alternatives to stuff that other kids are eating.

Some diets take more prep time than others, but I don't know that I've ever heard of stress to family or child as a stated objection to try it.

Hopefully you didn't take my response as a condemning of diet alteration... it's something we consider everyday.

What has been you experience since the alteration? My daughter has trouble with feeding, but at this age it's less about what it is than it is about the process itself. She eats veggies and meats mostly anyway... so eliminating most things would be fairly straightforward for us.

My concerns are minimal... I just don't want to restrict without good cause.

No, didn't view it as condemnation at all. My response was due to a couple things. One, some people feel the restrictive diet punishes in that you may have to take away a favorite food. We did have to do that, but my wife had the time and patience to learn how to make alternatives that she ended up liking quite a bit.

Some people fear the diets because they are afraid of lacking nutrition. You do need to be aware of which diets may end up naturally being deficient in certain things, and you need to make an effort to include those things (like calcium or perhaps D in CF).

The biggest concern of mine when talking about diet is effort. Many people don't do it because 'it's too hard', and they don't want to spend that amount of time in the kitchen. Some allow a level of cheating ('one piece of pizza won't kill him/her'), which defeats the purpose of the diet entirely.

So the 'stress to the child/family' objection your doctor offered is the weakest of the usual objections, and if you really wanted to try diet your doctor likely wouldn't object.

In our case, daughter had diarrhea and loose stools for almost an entire year, every day. We started on SCD (Specific Carbohydrate Diet), which was originally designed for Crohn's or colitis patients I believe, and within a short time (weeks maybe?) she started being entirely regular.

We all (wife, daughter, me) did the early part of the diet together, so when we sat down she was eating what we were eating. First few days was basically broths, then it gradually introduces easy to digest foods (well cooked meats and certain vegetables). Her stomach has been fine ever since. We're not still on SCD, but we still eliminate several things as I mentioned before.

If you want more details on anything about my experience, my email is in my profile.

I wish it were that simple and a magic diet made the autism go away...

Check out what Dr Greg Siegle has to say about autism. He was a geek in IT prior to becoming a neuroscientist. He addresses autism in the last 20 minutes of this talk: https://www.youtube.com/watch?v=AjqrNPomIzg

How can autism be diagnosed so early?

There are some tell-tale signs to be aware of in children or infants. Lack of speech, lack of eye contact, non-reactive to environment (seems deaf), no pointing. Repetitive behaviors and obsessions/compulsions can start to show early as well. Even things like toe-walking are very common (though toe-walking isn't exclusive to autism, but can be an indicator).

A Neuropsychologist will usually administer several standard tests. At this age the tests are very unreliable. There are other signs of behavior they looks for.

Admittedly, we went into it thinking "maybe it's Autism, maybe it's not... but we can't get therapy for the delays unless we get the diagnosis". Having read substantially more and seen more children on the spectrum it's pretty clear. But it's a good question and by no means an exact science.

I recall a study that was done on early intervention (12 months I believe) where the majority of children diagnosed with Autism were able to shed their diagnosis by age 3 (or something like that). The trouble is that the initial diagnosis may have just been wrong... it may have just been a delay caused by something else. The good thing is that the therapy is beneficial for anyone... so there's little need (beyond monetarily) to be concerned with misdiagnosis.

EDIT:

fecak's list is spot on.

More promising on young children than tricky psychological evaluations, a professor at my university has shown that there are ways to diagnose autism from structural differences in the brain using MRI images and image processing techniques.

http://dx.doi.org/10.1109/ISBI.2007.356861 http://dx.doi.org/10.1109/ISBI.2007.357110 http://dx.doi.org/10.1007/s10803-008-0681-4 http://dx.doi.org/10.1007/978-3-540-75759-7_107 http://dx.doi.org/10.1177/1362361310386506

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