Donald Grey Triplett: The first boy diagnosed as autistic | Hacker News Reader

Donald Grey Triplett: The first boy diagnosed as autistic

bbc.co.uk

40 pointsCarolineW16 comments

My ~2 years old son was diagnosed with autism last October. Looks like it is on the good side of the spectrum, but it almost ruined my marriage - my wife didn't take it well, and we probably lost precious months arguing about his symptoms.

The earlier you are diagnosed the better, so if you are suspicious, just go see a good specialist. Your family may try to talk you down: "he is just very introvert". Go se an expert neurologist anyway.

In my personal experience neurologists are better at this than psychiatrists. Most shrinks asked to see me and my wife alone on the first session, these are the wrong doctors: do not waste time with anyone that refuses to see the child on the first session. Do not waste time with anyone that is not specialized in autism. Specialists may be expensive but they are worth.

"The earlier you are diagnosed the better, so if you are suspicious, just go see a good specialist. Your family may try to talk you down: "he is just very introvert". Go se an expert neurologist anyway."

This. For ANY parent that suspects their child may have a learning disability or developmental delay RUN to get assistance. Many states offer early intervention to help with speech and motor delays.

My daughter got into EI around 12 months old and was diagnosed with ASD at 16 months. A diagnosis unlocks therapy and therapy (ABA anyway) is largely a play based program that helps your child build skills by breaking them down into much more fundamental blocks.

Speech therapy has unlocked a tremendous amount in terms of her ability to interact and communicate.

A diagnosis is just a key... maybe it's wrong... maybe they will outgrow it... it doesn't matter. A diagnosis doesn't mean your child will be subject to dangerous medication or institutionalization... it just means they will get help.

It kills me to see parents reluctant to get help due to stigma or refusal to acknowledge their child is struggling. There's no shame in giving your child every advantage possible.

Just last month, at the age of thirty-three, I was officially diagnosed as autistic by the NHS. Could some things in my life have been easier if I had been diagnosed earlier? Certainly. On the other hand, out of all the diagnoses to have missed, autism was a lucky break. It's not degenerative. I didn't get more autistic from thirty years of not taking my autism meds. I was never in any danger of dying of autism.

I'm not saying that hoopism did anything wrong. That is one very lucky daughter to have such an involved patent. I'm merely saying that you're not going to ruin your child's life if you don't catch it right away. It seems like parents are under a lot of pressure and I just wanted to say, as someone who has been on the other side of it, that your kids aren't going to hate you if you accidentally miss this one.

Thanks for the comment and I hope with your diagnosis comes some comfort (I am also 33). There's a saying that I think is worth repeating here: "If you've met one person with Autism, you've met one person with Autism". Really is hard to generalize in this population.

My statement is really geared toward the parents who suspect something but are either scared or waiting for things to change on their own. I just want them to know that it's not a huge burden to go speak with a professional and it may make a big impact. I didn't mean for it to sound as if not doing so would condemn you child... I just mean that it's a small investment (getting checked) with a potentially big payoff (early therapy).

> Just last month, at the age of thirty-three, I was officially diagnosed as autistic by the NHS. Could some things in my life have been easier if I had been diagnosed earlier? Certainly.

I'm glad your case is in the good side of the spectrum.

> On the other hand, out of all the diagnoses to have missed, autism was a lucky break. It's not degenerative.

Lucky you, but autism IS degenerative in many cases, early intervention is the best shot for those kids.

> I didn't get more autistic from thirty years of not taking my autism meds.

THERE ARE NO AUTISM MEDS AND SHOULD KNOW.

> I was never in any danger of dying of autism.

This. You don't die of autism, right. So you will have normal life expectancy, 70, 80 years. If you have a non-functional form of ASD, you will be a dead-weight for society for the rest of your life.

> I'm not saying that hoopism did anything wrong. That is one very lucky daughter to have such an involved patent. I'm merely saying that you're not going to ruin your child's life if you don't catch it right away. It seems like parents are under a lot of pressure and I just wanted to say, as someone who has been on the other side of it, that your kids aren't going to hate you if you accidentally miss this one.

I'm not afraid that my son will hate me, I'm afraid he wont be able to take care of himself and I will hate myself for not being here forever to take care of him.

Am I under a lot of pressure? YOU BET.

* please don't talk about this until you have kids of your own. You can't possibly know.

* please never say anything to stop a parent from looking for early intervention just because you did very well without it.

* a lot of people bullshit about being in the spectrum, please never do this.

Early diagnosis and intervention is massively important and yet for a parent of a diagnosed highly functioning ASD child (formerly known as Aspergers), it is one of the most frustrating things I've ever experienced.

Our child was diagnosed at 3; it took the experts a while to conclude, in the end they needed to see him in the proper environments, with other children. Poor social skills was one of the give aways, yet it wasn't all.

Wanting to give our child every opportunity we did go for what we could do at great personal / financial cost, our health insurance in Australia covered next to nothing. Why ABA isn't covered beats me, if your house burns down your house insurance will cover it, yet if your child has autism .. with economical impact approaching the same, yet you sit there with no bloody cover.

There's just so much, too much to write about in a single post. The comments from other people, even other family members: All children all difficult, he looks perfectly normal to me. (They have no fracking idea). The looks you get when you can't control his tantrums ... fortunately for us, this doesn't happen all too often out in the public, for some reason it's mostly at home. The sheer exhaustiveness of dealing with it all, whilst trying to hold down a job, stay sharp and current with the latest in programming developments. The sadness of not daring to give your only son a sibling, because it could also be on the spectrum and it might simply be too much. Besides, with savings gone... The hard toll it has taken on your marriage..

Yet you persist and it's all worth it. I can't know if it was worth burning our savings, but it does seem so. We will never know, we only have one shot at this.

A couple of key points: If you've seen one person with autism you've seen one child with autism. Each case is different. Please do not make assumptions about the next.

Someone wrote you can't die from autism. Suicide rates beg to differ; extremely strong correlations to depression and other mental illness.

Early diagnosis and intervention are indeed critical; starting school this year, we now have full engagement of the school who are professionally prepared to deal with the traits of autism. This is going to make a world of difference.

I wish the people here in the same boat the very best of luck. Stay strong.

>In my personal experience neurologists are better at this than psychiatrists.

In my experience, actually psychologists have better understanding of the needs of an individual in the ADS.

I agree, specialized psychologists are best for ABA and other therapies, but I maintain neurologists are better for diagnosis.

There are quite a few diseases that have the same symptoms, like epilepsy or fragile X syndrome - and those may be degenerative. A neurologist is the best professional to make a diagnosis of exclusion.

Reading this article gives me much hope for my two boys. They are both diagnosed with Asperger's syndrome. I am also borderline as well.

What I have observed so far aligns with the article, the surrounding community (social, education, family etc)plays a big part in having a lesser complicated life.

Thanks for sharing.

You are not alone and things go better overtime :)

Yep. Socializing plays an enormous part in that; more over, finding friends who accept you as you are. Still, there will be hard times.

>Still, there will be hard times.

Very true... specially when they are toddlers and their tantrums are mistaken for bad behaviour.

I had hard times with my child in the winter without a car and around of very judgemental people.

> What I have observed so far aligns with the article, the surrounding community (social, education, family etc)plays a big part in having a lesser complicated life.

And why i think this is getting noticed, and diagnosed, more now. Because the modern world, at least in the west, is dismantling those old structures.

Where before the oldest generation looked after the youngest while the adults worked the fields and such nearby, now the oldest live across the nation, or even the globe, and the youngest are packed off to schools that are overcrowded and understaffed.

"The town itself played a part in Donald's excellent outcome - the roughly 3,000 people of Forest, Mississippi, who made a probably unconscious but clear decision in how they were going to treat this strange boy, then man, who lived among them. They decided, in short, to accept him - to count him as "one of their own" and to protect him."

People ask, "What am I missing living on the east, or west coasts?"

I might be stereotyping, but you are missing people who care, or just don't act like they care. There's a sense of morality that is just not here.

(I don't want to argue with anyone. This is just my opinion.)

(that's a small town vs. big city divide, not a coastal vs. flyover state divide)

I am from India, and my younger brother is autistic. What the article states about the role of the surroundings and the awareness about autistic people is really true. I have been facing lots of hardships getting him into a proper school.

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