Autism thread

concentric wrote:

El-Producto: how has the soccer been for Owen? We've thought about getting Alex signed up for soccer, but haven't yet done it.

Soccer as with most group activities was a real struggle. He was happy to arrive, put on his jersey and start kicking the balls around but when it comes time to the ASD kids worst nightmare "Circle Time", it went downhill from there. Owen wanted nothing to do with the various drills/games they were playing, and had numerous meltdowns which is manifested in laying down away from the action.

We will persist, only because I think it's important that he be exposed to these things.. but goddamit it's hard to watch him struggle.

It's funny what you say about his head size, Owen has a gigantic head (I do too), but I read somewhere that ASD boys in particular trend towards large heads. Interesting.

Sorry to hear about the meltdowns at soccer.
Interesting about the large head size. Both my boys are above average, now that you mention it...

ETA: A very near and dear friend just sent me a link to a "paper" (looks like a blog post if you ask me), describing camel milk as "autism's elixir". I... I just don't... *sigh* It doesn't really make me angry per se, it just makes sad.

So news on my end! ABA sessions are going well, and the entire family is on board and fully invested, but hubby still feels it isn't enough. We're considering hiring a behavioral therapist full-time and not just 3 hours three times a week. Would be a bit costly, since it would imply having someone fly in from Canada in all likelihood and having that person full-time, plus someone else to take care of the boys and the house, but that would mean hubby could go back to work (and trust me, as much as he loves the boys, he is not stay at home dad material). We'll see how things unfold. Maybe things will move quickly.

Eleima: that is really encouraging news about ABA. You've got the ball rolling. The challenge will be continuing that while balancing what everyone else in the family needs. I sympathize with you and your husband. As much as I love my children, I would not be happy as a stay at home mother. I'm fortunate that I've been able to work full time while seeing my son progress.

Something I saw today that really, really bothers me:

http://www.washingtonpost.com/opinio...

This is a young black man with severe autism and cognitive impairment who has been held in solitary confinement.

I saw this episode of Frontline a few years ago, about how the mentally ill become incorporated into the prison system because there's no real treatment system otherwise. It has really stuck with me. Obviously there's no easy solution but there has to be a better way:

http://www.pbs.org/wgbh/pages/frontl...

That's just heartbreaking. Like you said, Concentric, there has got to be a better way... I don't want to get all P&C, but sometimes I wish the government put more money in healthcare instead of planes and tanks.

Today is my son's third birthday and he is blissfully unaware of it. We had a cake with candles, but he basically just milled around, running to and from the table, curious but not exactly engaged. Kinda stings. Especially when there is a boy only a few months older sitting next to where he should be.

Baby steps, I guess.

Happy birthday to Matt! It took Alex a while to understand what all the fuss was about. He was 4 when it all began to make sense to him. But I understand your frustration.

My son is 5 and still doesn't really get birthdays and holidays. We're fortunate that we have family who live nearby and come visit, so he's happy to see them even if he has no idea why they're all there. It's a little weird and sad to go to birthday parties for kids his age and see how excited they are, but generally he's so happy all the time that I don't feel like he has missed out on anything, only that I have.

The amazing Temple Grandin is doing an AMA on Reddit:

http://www.reddit.com/r/science/comm...

Wow, thanks for sharing Maq, I'll definitely keep an eye out!

And thanks Concentric and Clocky. It's not so much frustration as sadness, I guess. We had another appointment today in Paris with a fancy shmancy child psychiatrist, and it basically didn't amount to anything, he seemed more interested in our marital troubles. Which do have an impact on the kids, but... *sigh* We're on the same page for Matt, isn't that good enough? It's just so frustrating when medical professionals don't have any concrete advice for us. We'll stick to the ABA behavioral therapist and the speech therapist for now.

There is an interesting discussion on autism on Isometric this week.

http://isometricshow.com/

Thanks for the link - I am eager to listen. I've got To the Moon but haven't yet played it.

I am interested in what everybody else is doing to handle the holiday season. Would others be interested in updating what's going well and what's harder during this time of year?

We won't be moving from home. Matt knows the house, he's a stickler for a routine, so we'll be celebrating there. Which is convenient, because it's my parents' house, so my sister will come stay a couple of days for Christmas, and that's that. Nothing fancy.

Downloaded the podcast, thanks.

I'm cautiously optimistic this year. Last year Owen couldn't have cared less about Christmas, didn't even want to open presents. This year he's talking a lot about Christmas, and got right into helping my Dad open his birthday presents in September.

Soccer continues to be a struggle. He's more than happy to run around and kick the ball, but as soon as the coach wants them to start doing organized games/drills Owen lays down on the ground, and withdraws (his reaction to overstimulation). We will keep at it, because I'm a firm believer in exposure.

We also just found out that there will be 4 ASD kids in Owen's kindergarten class in September (split JK/SK). According to his OT he is the highest functioning by far, but unfortunately that means he will get lost in the shuffle as they will likely only have 1 EA for the class, possibly another but only if one of the kids is a flight risk or has self-injurious behavior. This is causing my wife great stress, and we are now considering what our options are for other schools. We chose the Catholic school because they tend to have more resources available, but it doesn't seem like that will be the case. We are looking into Montessori, but he would have to be toilet trained (I'm fairly positive he will be), and we aren't even sure they take ASD kids.

concentric wrote:

I am interested in what everybody else is doing to handle the holiday season. Would others be interested in updating what's going well and what's harder during this time of year?

I'm a little stressed about the holidays for a variety of reasons, but one of the bigger ones is that we'll be heading out of state to visit my sister and my sister-in-law. I'm not at all worried about traveling with my son; he's a great traveler and always does well on planes. What I am worried about is how his cousins will treat him.

My sister's kids haven't seen him since he was a newborn, and I have no idea how they'll react to him now. They're slightly older than he is, and I just don't know if they're prepared for a kid who doesn't talk, doesn't eat, doesn't care about Christmas, wears diapers, and otherwise is very different than other kids they might be used to. They could get along great, or they could be really disappointed and frustrated.

My sister-in-law's kids, meanwhile, have seen my son as recently as this last summer, and the older girl doesn't like him at all; the younger girl is pretty wary of him, too, because we had some problems with hair pulling the last time they were together. I wasn't on that trip, but apparently the older girl was a real brat to my son, freaking out and getting dramatic if he so much as looked at her.

I'm just... Ugh. I want this trip to go well, especially because it's something my mother has engineered and paid for, but I'm really afraid of how it'll go. My son gets along great with his classmates at school and his social skills have improved dramatically in the last few months, but in a new environment with a lot of stimulus? I don't know. And if his cousins are mean to him or tease him? I may have trouble not throttling them.

We'll be doing a two day drive to my parents' house for the holidays, as we have every year since my son was born. We'll prepare him for it - last year it was a real novelty to stay in a hotel, and I hope that remains the case. He travels fairly well. He will also look forward to seeing his grandparents. He understands presents, but the issue is that he thinks they're all for him.

We're still working on potty training. He is making some progress, but often resists going. He is just starting to recognize when he needs to go. If he doesn't want to when we tell him, he will tell us a rhyme: "Potty, potty, do not stay; potty, potty, go away." It sounds like he must have picked it up somewhere, but I've asked his teacher, SLP, and daycare provider, and they haven't heard it on anything else like a TV show. Alex told me this morning he made it up himself. If so, I am really amazed.

El-Producto, we found that friendly contact with the teacher as well as a communication notebook helped Alex get the attention he deserved. In addition, several of his therapists observed him in the classroom, and I think that that put pressure on the teacher and school to implement programs that worked better for my son. That was an unintentional bit of advocacy. [quote]I wonder if there are parents of older autistic children around you who could give you advice. In the US, what I've heard is that private schools can be harder for children with disabilities, because they aren't required to follow federal mandates.

Clock, hearing that your son was mistreated by his cousins really bothers me. Would your sister and sister-in-law be willing to work with their children so that they are civil to your son? Though it would be more difficult for them to keep from reacting if he was pulling their hair. Still, they should learn to act better with him. I remember when I was a child and spent time with other children with cognitive disabilities. I liked them, but didn't always know how to react because their behavior could be so different from other children. A kind guiding hand would have helped me navigate that better.

clover, that is fantastic!

We received very annoying news about my son's Medicaid waiver application. He was offered a spot for the Intellectual Disability waiver, for which he is NOT qualified, and rejected for the Health and Disability waiver, for which he does qualify. I will call tomorrow about this. Maybe it is just a clerical error, but it's never that simple, is it?

Clover, that is absolutely fascinating and I would definitely like to hear more as your research project progresses. Haven't read the pdf yet (posting from my phone), but I'm super interested. Definitely curious about how you're going to measure the outcome, among other things.

Sorry to hear about the issues with Medicaid, Concentric. Those are just extra headaches we could have done without. Hoping it works out and quickly.

Hi all, it's the end of the academic quarter here, so my first round of research drafting is done (for that Autism & Visual Neuroscience class I mentioned). The class projects were targeted as proposals to an imaginary autism foundation, but my professors are interested enough in this as a Real Thing that I could possibly turn it into a PhD topic down the road. 0_o

Visual perception differences as a potential screening tool for adult ASD diagnosis

tl;dr version:

The development of a short, cost-effective initial screening tool for adult ASD diagnosis could play an important role in parent support services. Whether or not a parent who chooses to undergo such a screening elects to pursue full diagnosis, they are then armed with a better understanding of their own relationship to the autism spectrum and the overall Broad Autism Phenotype, and can interact with and make use of parent support services accordingly. Parents who are able to receive the types of support they need will, in turn, be able to better support their children with ASDs, leading to better individual and family outcomes overall.

Simple behavioral screening may well produce false negatives among this group, as high-functioning adults have often learned many compensatory and adaptive behaviors and may not present with a clinical threshold of behavior-based challenges. Nevertheless, underlying cognitive, social, and sensory patterns continue to be a factor, whether or not they manifest in observed behavior. Therefore, sensory- and perception-based screening, in conjunction with self-reporting tools, may provide a more accurate and objective method of determining whether the parent or other adult should seek a full diagnostic evaluation.

Another area of further research based on the results of this and related studies will be the continuing exploration and development of perceptual, cognitive, and sensory-based evaluation methods and diagnostic criteria for ASDs. Research continues to reveal deeper layers of functional perceptual and processing differences in individuals with ASDs, and the limitations imposed by behaviorally-based tools and thresholds will continue to confine researchers and clinical professionals to a relatively narrow, “outside-looking-in” view of spectrum conditions. Like the parable of the blind men and the elephant, behavioral-based researchers each hold a different piece of the puzzle but have not yet been able to perceive a coherent overall structure of the autism spectrum. By spurring exploration of more intrinsic evaluative criteria, it is hoped that this study will help the research community develop a more accurate picture of the overall nature of ASDs.

Thanks to the parents and everyone who have been kind enough to share their stories here... several have been anonymously cited. I am curious whether this is the first time GWJ has been used as a primary source!

Eleima wrote:

Clover, that is absolutely fascinating and I would definitely like to hear more as your research project progresses. Haven't read the pdf yet (posting from my phone), but I'm super interested. Definitely curious about how you're going to measure the outcome, among other things.

Thanks Eleima... I would love your input as it gets further along (or even now), since I've decided, at least for now, to pitch the concept from a public health perspective.

Wow... you cited me quite a bit in there. Not upset or anything, just wasn't expecting it. If anything, it makes me feel a bit better, because that whole process just felt like a complete waste of time on my part. I'll just look at it as assisting with research data collection now.

Tristan is being re-evaluated for ASD, now by the school system's psychologist. With the rapid progress he's been making, his OT and a couple other therapists really don't feel he's autistic. We only had one appointment so far (in a nearby school, within a sensory room) where the psychologist was able to watch him. While I knew I wouldn't get much out of her after one visit, she did tell me that he isn't displaying the classic symptoms they tend to look for (stimming and such).

They did an in-home series of tests a week or two ago now (name the object, name the color, match the color, point to the correct object, etc) that went really, really well, besides a couple short meltdowns. The therapist who did that test was surprised to have him get through all the testing, and told us that from her perspective, all the skills are there (even advanced in a few cases), but that he doesn't like to show people what he knows. It's the process of interacting and displaying those skills that seems to overwhelm him, or cause him to lose focus. I still think he's on the spectrum, but feel he's going to be higher functioning. But, if they say it's something else, we'll roll with it and keep getting him whatever help he needs.

clover wrote:
Eleima wrote:

Clover, that is absolutely fascinating and I would definitely like to hear more as your research project progresses. Haven't read the pdf yet (posting from my phone), but I'm super interested. Definitely curious about how you're going to measure the outcome, among other things.

Thanks Eleima... I would love your input as it gets further along (or even now), since I've decided, at least for now, to pitch the concept from a public health perspective.

Absolutely. Don't hesitate to ping me.

Just got great news! Owen had finally come up on the everlong waitlist for an IBI program, and the doctor had called to do a reassessment. We were really worried, because Owen has made such great strides, and his OT/SLP said he probably wouldn't be eligible anymore because the child needs to be on the Moderate to Severe end of the spectrum. We were sold IBI as a program to help get him ready for school, so it sounded like something he could really use (we all want as many services as possible).

My wife did the reassessment, and was pretty upset as she was answering yes to most of the questions about Owen's abilities.

I just got a call from the Doctor, and she said that they are making a special case for Owen and are accepting him into the program. She said that his profile is interesting in that he is basically at the same developmental level across the board, and he is a year behind neurotypical kids in almost everything. She said that it is unusual for a child to be consistently behind like that, that usually they are behind in certain categories some more than others. She thinks it's because he responded so well to the private ABA therapy that he was getting, and that he would be a good candidate for the program because he responds so well to therapy.

I just called my wife at work, and I think she was starting to cry she was so happy. It's so frustrating when you want your child to be as high functioning as possible, but when they are they don't get any help.

Yesterday we got an official diagnosis of something we've suspected for a while. My daughter is officially on the spectrum.

Given that most of the people in my family and my wife's family have "autism-like" traits, I'm not surprised at all. She was already in speech and occupational therapy before we went for the diagnosis because of sensory processing issues.

We were already homeschooling her, and the neuropsyche (and the people at the school who evaluated her) said we were doing the right thing by her. She's so smart, but she gets overwhelmed very easily. We've been having a lot of success with the Sonrise program founded by Raun Kauffman and his parents, which we started before we even got a diagnosis. A year ago eye contact was fleeting at best, and visits from relatives were met by hiding under a table and crying for hours. Today she looks forward to visits and eye contact is a lot easier. The difference between taking her to build-a-bear last year and this year is massive.

I feel kind of relieved in a lot of ways. The diagnosis isn't really going to change what we've been doing with her that much, except wears now eligible for more services. Tyne real relief comes from being able to talk about it, especially with snarky people who think my daughter is a mean it antisocial kid because she can't handle people singing at birthday parties.

doubtingthomas396 wrote:

Yesterday we got an official diagnosis of something we've suspected for a while. My daughter is officially on the spectrum.

Given that most of the people in my family and my wife's family have "autism-like" traits, I'm not surprised at all. She was already in speech and occupational therapy before we went for the diagnosis because of sensory processing issues.

We were already homeschooling her, and the neuropsyche (and the people at the school who evaluated her) said we were doing the right thing by her. She's so smart, but she gets overwhelmed very easily. We've been having a lot of success with the Sonrise program founded by Raun Kauffman and his parents, which we started before we even got a diagnosis. A year ago eye contact was fleeting at best, and visits from relatives were met by hiding under a table and crying for hours. Today she looks forward to visits and eye contact is a lot easier. The difference between taking her to build-a-bear last year and this year is massive.

I feel kind of relieved in a lot of ways. The diagnosis isn't really going to change what we've been doing with her that much, except wears now eligible for more services. Tyne real relief comes from being able to talk about it, especially with snarky people who think my daughter is a mean it antisocial kid because she can't handle people singing at birthday parties.

Diagnosis day in many ways was the best day of our long journey. It allowed us to accept and move on, and we haven't looked back.

El Producto, that's such great news that he's accepted into the program. I'm so very happy for Owen!!

Doubting T, I'm sorry to see you post here, but glad you're taking diagnosis this way. In a way, I'm almost envious of how you and El Producto speak of it. I saw it much as you do, but for my husband, it's mostly been a downwards spiral from which I fear we as a couple won't recover. He's still very much in denial and thinks Matt will be "normal" if we do intensive, full-time therapy.
Ugh, sorry, enough about me, I've LiveJournal'd enough as it is.

Welcome, Doubting Thomas.

El Producto, that's great news! I wish resources were easier to get for the people who need them. Keep us up to date on how you and Owen are doing.

doubtingthomas: El Producto's response on diagnosis day sounds a lot like mine. We already kind of knew, and the diagnosis made therapy and support easier to get. So getting the official label was actually kind of a relief, as it is for you too. I'm really happy to hear of your daughter's progress over the past year. My son has made so much progress too. I feel very fortunate for that reason.

Eleima, I'm really hoping your husband comes around. Maybe it will just take him more time. But I am glad he sees the need for therapy. I'll be thinking of you all.

My daughter had another speech therapy session this morning. She's smart and understands most of what we say, but for whatever reason just isn't talking much at all. But the speech therapist, who's someone I trust, really doesn't think she is on the spectrum. Her social engagement and skills are far ahead of where Alex was at her age.

Thanks, Concentric. I hope so too but I really think it might already be too late. He sees the need fr a therapist for Matt but for himself or for us.
That's great news about your daughter! As much as I love my son, I have to confess that I'm praying his younger brother isn't in the spectrum.

That's tough. I do hope it works out between you two.

I also feel kind of guilty hoping my daughter's not on the spectrum. If she is, she is, and really that will be fine. While Alex is really amazing and wonderful in so many ways, I know that his life will also be harder because of his autism. Maybe every parent just wants good things for his or her child.

I don't feel guilty at all hoping that my daughter doesn't have any sort of condition like my son. It doesn't mean I love him any less. It does mean I'm being forthright about the kind and amount of care he'll require in his life and preferring to avoid doubling that amount of work.

That's a good point. For me the guilt comes from wishing my child was a person different from what she turned out to be. But there's no reason to feel guilty about not having the extra work that comes with a child's disability.

concentric wrote:

:( That's tough. I do hope it works out between you two.

I also feel kind of guilty hoping my daughter's not on the spectrum. If she is, she is, and really that will be fine. While Alex is really amazing and wonderful in so many ways, I know that his life will also be harder because of his autism. Maybe every parent just wants good things for his or her child.

It's interesting, we have a friend who has a 2 year old daughter who is behind in speech. Knowing what I know now, there is no way that kid is on the spectrum it really is amazing the differences between an ASD kid and a Kid with just a speech delay.