Diagnosed 2 days ago

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Heh, no foolin.

My DD5 (sometimes I wonder if she ain't got ODD, but for all intents and purposes she is as NT as the child of an ADHDer and an Aspie can be) graduated preschool last night.

It is 9:11 am on the first day of her summer vacation and I am already getting a crash course in just HOW HARD the TV battle is going to be to fight this summer.

Ugh. Right now I am sort of hoping that I will find that my dad's old house has to be demolished, just so we can spend the majority of the summer building a cabin. Out in the woods. With no TV and no Internet. But the little snits would just go down to "Mamaw's house" (she's their great-aunt, not their grandma, but she's sort of taken on the role of surrogate grandparent in Daddy's stead), get popsicles, and hop on Minecraft.

Grrr. One thing I do to help with it is try to be in the room a lot (even if I'm cleaning or sewing or reading or on the computer) so I can talk with them about what they are watching (why it's smart, or stupid, or inappropriate). You might not be able to talk WITH any 19-month-old, autistic or otherwise...

...but you can definitely talk TO them. Dunno-- some smarter mom will have to weigh in on whether that constitutes an attempt to meet them in their world, and whether it might or might not improve relatedness. I don't ever remember a time when I didn't want to talk with people about my books, but I might have had a complete and total explosion if people had pestered me while I was reading.

A couple things I want to weigh in on:

I did not get a diagnosis as a child, and have been struggling to get one as an adult. Had I been born in this decade, I'd surely have qualified for early intervention - although I talked early and often and was hyperlexic, I also spent my entire kindergarten experience at a single play station, repeatedly "washing" a shell. Three years. Teachers were definitely worried.

The problem is that autism is framed entirely as a disability, when the reality is it's a difference that may or may not have disabling aspects. Some of those differences are in fact assets, even to the people we classify as "low functioning." I process the world cognitively rather than instinctively or emotionally. Things have to make sense for me to do them (which is often a downside, and something I think is the focus of much of the therapies like ABA and floortime) but I can learn to do near about anything. I came to recognize that when I run into a social situation that I can't handle, it's generally because I haven't amassed enough data to know how to behave (am just now learning to manage funerals and how to respond to others' grief, for instance.)

BuyerBeware is entirely right. YOUR child is what matters. Unfortunately, there is a LOT of doom and gloom out there, especially since many NT parents struggle with having children who are different from them in any way. Don't listen to any of that - it's crap. Nobody can predict the outcome for your child any more than they can look at an NT toddler and predict they will be a stoner when they grow up.

That said, you can do some work to allay your apprehension: your child is 19 months old, call a specialist in disability or special needs trusts and figure out if you should start saving for one. Time is on your side; you have a LONG time to plan - make sure the financial resources will be there so that you don't have to worry what will happen to your child after you pass on. Essentially, find a way so you aren't distracted by your concerns about the future - you need to focus on the present.

I want to mention some concerns expressed on this forum about ABA - it is an excellent program when in the right hands, but be cautious about practitioners who approach it like they are training a dog. The idea is to provide tools that show your child he or she can communicate, not to "get them to behave." I like the idea of combining early childhood intervention with mainstreaming - but be aware that sometimes a mainstream environment can be difficult for an autistic child - they may need more supports than other children.

I encourage you to review the posts stickied at the top of this board - there is a LOT of collected knowledge here. In particular, there's a list of books that may be an improvement on the things you're reading that are scaring you: not everything about autism is scary.

A book I'm not sure I added to that list: Helen Keller's "The Story Of My Life," available for free online. She suffered from an extreme deficit in communication - albeit with very different causes - and rose above it - and the model Anne Sullivan used to help her is extremely applicable to autistic children. It's helpful to recognize that much of Helen Keller's behavior as a young child is spot-on what autistic children do: tantruming, grabbing other people's things, wandering aimlessly (even swinging and spinning!) Remember that your child's "autistic behavior" serves a function in the same way that Helen Keller's childhood behaviors did: it offers them a way to make sense out of the world.

Yes, I remember it very clearly. It was a two-part thing: first, I was avoiding some things, for instance the program was a Montessori-style program that required the children to choose their own activities, but in this one, you weren't allowed to skip steps, so you had to "prove" you could do something before you could get to the next step. In order to read a real book, you had to read an entire wall of "books," little packets of flashcards of unconnected words. I had been reading books since the age of three or four (I can also remember clearly the moment when I finally understood that the symbols on the page stood for sounds that could be arranged into words) and wasn't about to do busywork for anybody. (This caused my near-failure in second grade as well - I refused to do SRAs for the same reason; wasn't about to prove that I could read and understand when I could read faster than the teacher.)

I also didn't do well in the social environment at the school - I remember most of the girls being "mean." My one companion was in a wheelchair, and I think he must have become seriously ill or passed away because he vanished after my first year there. So I chose a solitary station.

Then, the shell - from a google image search of shells, I think it was a knobbed whelk shell - fascinated me because it became a deeper color when it got wet, and then lightened when it dried. The outside was rough and greyish and absorbed the water enough to make it look darker, while the inside was smooth and not affected by the water as much. It was a I loved watching that happen. I don't remember clearly if I performed the action in a ritual way or not, but my goal was to watch the color of the shell change slightly during the process.

(Oddly, one of my favorite pastimes when I got my first adult job at the gift department of Saks Fifth Avenue was cleaning all the crystal, which I never connected to the shell-washing until now. Loved seeing it sparkle when it was all done. Coming from an incredibly messy person, it's funny that this was such a soothing thing for me.)

Does that help?

It is a very interesting story and thank you for sharing it.

There is so much going on there outside of they why of washing the shell over and over. Although your interest in it makes perfect sense to me! I would think a good teacher would have figured it out and showed you different things that changed color as they got wet or something similar. The school sounds very rigid from your story.

I was also struck by your friendship with the child in the wheelchair. I don't know what you felt on your end of course, but I can only assume that your companionship probably meant a great deal to him.

I also like that you worked at Saks! Very nice!

You packed a lot of information into your response and I really appreciate your sharing it with me/us. It does help. You read books or talk to most people and they never explain the why of extreme focus only the existence of it. Thank you again.

No problem - do note that I've never been formally diagnosed with anything other than garden-variety depression and anxiety, and I score borderline on the Baron-Cohen test.

Unfortunately, our tendency as a culture is to assume that something isn't there when you've acquired skills to master it (which isn't the same as not having it.)

Thank you everyone for the response. My reason for avoiding TV was that it has been linked as an autism trigger. However at this point its impossible to feed my kid without it.

I believe (maybe in error) he's referring to the popular idea that TV viewing causes autism (and ADHD, and dyslexia, and behavioral disorders, and...)

I get this A LOT. I guess it's been asserted on a lot of daytime talk shows.

Is constant TV viewing good for a kid?? NO. Is passive TV viewing good for a kid (the kind where they just sit there and soak up that blue-green radiation)?? NO. So don't let a kid watch it for hours n hours n hours a day (don't, in other words, run a house like mine where the TV runs constantly from 3:30 in the afternoon until 9:00 the next morning-- hey, my in-laws TV was literally never off while FIL was living, and I believe in picking my battles) with little to no input from Mom and Dad.

Try, in other words, not to utter that beloved American refrain: "You kids sit down, shut up, and watch TV!!"

But everyone needs to relax somehow, and TV works for a lot of people. You can't entertain your kid constantly, and TV entertains a lot of kids long enough for you to do the household chores that really need to be kid-free (and maybe phone a friend once a month or so). TV is THE accessible media for preliterate children.

I DO believe that TV can aggravate autism-- but it isn't some neuropathologic property of the TV set. It's that verbal autistic kids are like parrots-- uncanny mimics. They mimic what they see on TV, either because they liked it, because they're slow in coming up with words of their own (for a few months of my 15th year, I communicated with my peers almost entirely in carefully chosen quotes from Queensryche, the collected works of John Steinbeck, and M*A*S*H), or because they want to get the result that the TV character got-- usually laughter, attention, approval, acceptance.

And we all know that stuff don't go down in real life like it does on TV. WE know that, because we're 20 or 30-something and we've had lots of experience of the world. But kids don't know that-- not even NT kids, although they are quicker to pick it up. They haven't had the experience.

Besides that, if the little perseverating angel is staring at the TV for 8 hours a day, s/he isn't interacting with people, or learning motor skills, or developing frustration tolerance, or learning life skills. All things that come from LIVING LIFE, not watching TV (and not reading a book, either-- trust me on this, even though books have that squeaky-clean schoolteacher-approved image, because my life proves that you can be a cute little hyperlexic bookworm and still be incredibly autistic with no friends and very little understanding of how life works or ability to actually care for yourself).

Make sure your kid LIVES. Gets out, sees stuff, does stuff with people (whether that's play or chores around the house or therapy, or all three), plays with stuff that requires the engagement of the mind.

But I really don't think that an hour (or three) of TV is going to make the difference between success and failure (or autistic and not).

Thanks for the advice about tv time. We will limit t to feedińgs. We are in the process of obtaining Aba services but it might take over a month. In the meantime our 19 month old son isn't learning anything. He spends all day playing with toys in repetitive ways. For example turning pages in a book but not actually looking at the pictures, opening door knobs, staring at lights or running around. I understand he is a kid and don't expect him to start reciting poems, buy is there a way to get his attention on something productive? We are trying to learn floor time techniques but I am really worried that he has 0 attention span.

As I noted above, like many things that involve the senses, in my experience TV watching can "trip" with an ASD child. When my son was tiny, it fascinated and calmed him. But sometime between toddlerhood and age 8 or so, it turned into a stress factor, as had many other potentially intense sensory experiences. The difficulty is in realizing the experience has changed for a child, because both the child and the parent will assume it remains what it used to be, a useful occasional distraction. But that was definitely not the case as my son aged; he started treating it almost like an addiction, because he could no longer gain from it what he sought, and in the process he became more and more agitated by it. For a while, TV could not be on at all (which was difficult, because my ADD daughter needs background noise to focus). As he matured, he reached an ability to balance it. But that process was interesting to watch. TV can "trip" and, once tripped, become a "trigger." Not causing ASD, obviously, but agitating your child and increasing the possibility of meltdown.

I had no idea what was going on when my son was a toddler, so you're ahead of the game there - but as he got older, when he had rigid interests, we found that we could not address them directly, but we were able to get him to move tangentially into other things or other ways to interact.

For instance we moved his obsession with guns>mechanics>engineering>explosions>big bang>astrophysics>engineering>nerf gun modification (I kid you not, that was the way it went.)

This video from this site appeared on my Facebook feed a while ago - I'm not sure how I feel about the whole project, but I like the description of how she began interactions with her son: https://www.youtube.com/watch?v=tMdiegBb7Bw I think the key is not to "get them to do something" but to find a way to interact.

Maybe start by opening and closing doors with him. Narrate as you do it. Then try to expand upon it by putting one of his favorite things on the other side of the door, and exclaiming with surprise when you see it together. Start slowly, with the things he likes, and keep trying to make the game broader as he is ready. Sorry so brief!