Autism thread

I'm going to add on a little to FSeven's post: it is indeed worth looking into additional types of treatments, though for me they have to be evidence-based (pretty sure FSeven would agree with that caveat). Maybe I'm not as optimistic as FSeven as to outcomes. It's true that the brain at this age is plastic, and new connections are being made all the time in it. Does that mean that your child will no longer be autistic? That's a much tougher call. I have to assume that my son will always be somewhere on the spectrum. Doesn't mean he can't be a functional or even a really successful adult.

At any rate, every case is different, and there are no guarantees. I'm positive that what we are doing is making a big difference, but I also have no idea what is in store for him. The doctors and psychologists at the UIowa Autism Center who see him will not make predictions as to any child's outcome. But do look into what else you could do and see about whether it's something possible. You are getting started when he is very young, and that should be very helpful.

On a lot of levels I'm "indistinguishable from a neurotypical person", because I've learned how to act reasonably well. But I don't think people ever leave the spectrum or are "cured", per se. It's a worldview that is baked in even if I can manage myself and have understanding of how to function in various spaces.

The world is very loud if you're autistic. Loud loud loud. People, their noise, their unpredictability, light, sound, texture, words, color, it's all turned up and there's no filter. The goal of therapy, looking back to when I was younger, is to help you make sense of all the incoming signals. Therapists that want to help you learn skills to be less stressed and function better are good; therapists who want to "fix what's broken"... that can go either way.

Although, if I were offered the ability to have been "cured" when I was a child, I wouldn't take it, either. I understand the impetus behind all the cure talk (not here, but other spaces), but it can't help but sound as if neurotypical is "right" and anything atypical is "wrong". I guess that's why autistic adults are statistically more likely to be Buddhist... we're all looking for that middle way. I want to get along in the world better, that's why I'm dropping thousands of dollars on formalizing this process now, but I don't want to be "cured", dammit. That's insulting.

::

I commend all of you working so hard to get good therapists and school situations for your kids. I didn't have formal therapy as a kid- my grandmother read to me for hours every day, and I was an only child who got to do my own thing in my mom's artist studio while she worked... supervised, but able to be in my own world. I can't even imagine how things would have gone for me without that orderly base to build on. It's really encouraging to watch you all search for what's truly the best solution, now that we have so much more knowledge, instead of throwing up your hands or just wanting to "fix your kid and make them normal".

clover,
I really appreciate you posting here. I'm also on Wrong Planet, and a few other boards I participate in have autistic adults on them. Hearing their experiences is really helpful for me. I feel like I can understand better why my son holds his hands over his ears, e.g., when it's not all that noisy to me.

I didn't know that autistic adults were more likely to be Buddhist. If I had to label myself, Buddhism would be the closest. I have mild anxiety, something that many autistics also have, and Buddhist meditation is really helpful for me.

Basically my goals for my son are to help him adjust to situations that are hard for him. Just knowing the rules of many social interactions will make life easier, regardless of how much he wants to socialize with others or not. Likewise sensory experiences that can easily overwhelm him. If we can get him to use other strategies when he begins to feel overloaded, that should really help. Of course he needs practice with fine motor skills so he can learn to write more easily and button his clothes, etc.

As for eye contact, I have heard positive and negative things about working on improving it. Improving my son's is a goal, but then again it's already something he will do on his own (and of course on his own terms). If we can get him to do it at socially significant moments more consistently, such as when he greets people, I think it will be helpful for him. I don't think it's too overwhelming for him to do it, but we'll see.

FSeven wrote:
PurEvil wrote:

I need to really get on looking for a good therapist, but I just can't seem to find the time for it with my work. I'll get to it eventually.

Please, please, please do whatever you have to do to get the ball rolling on this ASAP. Take a vacation day from work if you have to. The best chance for gains and a "normal" adult life is based on progress made when the child is young and when the brain is most malleable. Also, be present in the therapy sessions and evaluate the therapist on their technique, not just on whether or not he/she clicks with Tristan. Find one that is getting results. And find one that makes every session and is punctual. There is a very small window here and Tristan needs every single session that is coming to him. Your son is more important than your work.

I meant for me. I've already got the ball rolling pretty well in terms of him. He sees a developmental pediatrician tomorrow, has his first sensory therapy session on Monday, and there are a handful of other things scheduled for him in the coming weeks. Just about every day off I will have will pretty much go towards helping him, sometimes with multiple appointments with different providers in different counties. I'm going to be a very tired dad, but I'll be damned if I sit around while he could be receiving some kind of help. Our early intervention team takes more of a parental coaching model, so my wife and I will try to both be at every one of them.

The funny part about all that is that we had his 2yo checkup on Monday, and the doctor couldn't think of anything to do that we weren't already getting started. She said that while she was also worried about his current developmental status, and that she was impressed that we were so far along in the process of getting help without having been told about some of the programs.

What I'm procrastinating with is seeing someone about my issues, not his. My issues are a whole different can of worms, mostly dealing with my introverted personality, lack of emotional expression, issues that lead me to believe I'm on the spectrum, along with a long history of depression. I've been out of therapy and off any kind of meds for around a year, because I had no trust in my last therapist due to actions by him I'd rather not talk about. It puts me very heavy on the defensive when it comes to my own treatment, especially when I don't particularly trust most people to begin with. And with me working 16+ hour days due to this snow storm that just hit, along with all the appointments I have for him, unfortunately it's pretty easy to put off anything to do with myself.

I'm not really going to comment on the rest of it, because I think it's focused on a misunderstanding of my post. I'm pushing therapy with him, pretty heavy. We'll try things, and some will work, and some will fail. My hope is that the things we try will benefit him, or at least do no harm towards his development.

PurEvil, I'll post more about what I've been doing lately when I have a chance, and update after my eval. There's definitely a dearth of info and services for adults as compared to kids, and I'm supremely fortunate that I found a great specialist (in my own zip code, no less).

PurEvil, you must take care of yourself first. I see this advice everywhere because it is so hard to do. Let us know how things go.

Yesterday we got a confirmed diagnosis of autism for Tristan. It's not something I thought they would do, I thought the visit would pretty much just be them observing and then giving us the "we'd have to see him more for an accurate diagnosis" type deal. Instead we got the, "oh yes, he's definitely autistic" response. Even with me being nearly certain, having someone voice it, and put that diagnosis to him, hit me like a ton of bricks. My wife asked the question about increased risk in future pregnancies if we tried for a third, and the 50x risk pretty much shoots that down. They brought out the DSM criteria for diagnosis and there wasn't really anything we could argue with.

I'm still hopeful for Tristan, I'm not sure what the future will hold, but I will do my best to get him whatever help he needs. I'm actually looking forward to his therapy session on Monday. My next step is to find a doctor for myself, and go ahead and get tested, though I believe a positive diagnosis for me will have my wife resenting me. We're not really in the best of places in our marriage, she only stays here when I'm not on-call, so this might be too much strain on what's left of our marriage.

I looked at the forum on WrongPlanet, but it doesn't really catch my interest much. I don't feel like I can relate to a lot of those people, and much of it seemed like using their diagnosis/quirks to pat themselves on the back, or intentionally making themselves martyrs. Much of what I read just seemed kind of petty. It was a fairly small sampling of threads though, so I will look into it further later on. I know that with any forum, you hit on the wrong group of threads on the wrong day, and the whole site can seem like a bunch of /b/tards, so I'm reserving judgement until a later time.

Edit: My boys, Sabastian on the left, Tristan on the right.
IMAGE(http://imageshack.com/a/img580/9158/35uc.jpg)

Well, having a diagnosis means something definite as well as the ability to chart a path ahead.

I hope things improve in your marriage. She is the one who will need to address her resentment. I think you are doing a very good thing for yourself by getting therapy and seeing about a diagnosis.

Your children are beautiful. You are really doing the best for Tristan by getting him therapy now. Not every family has the wherewithal for that.

By the way, we have a second child who by all indications is NT. It will be good for each to have each other. Alex benefits from the social interaction, and I hope my daughter will have an easier time learning empathy, which I think is one of the most important qualities to possess. They do love each other a lot.

I must tell myself that as stressful as it can be to worry about my son's future, everyone's future is uncertain, and everyone has struggles.

Just finished 9 solid hours of eval. Time to have someone else cook dinner.

Also realized I have abysmal eye contact if I'm not making a really conscious effort at it.

Sorry Purevil, I remember how unexpectedly hard diagnosis day was despite my certainty of the result. One way or the other, it will get better with time...Probably.

I also agree with your assessment of Wrong Planet. I stopped reading once I got to a thread of people arguing over how severe their autism was, thinking, "if you guys are severe then my son is several levels worse than severe." I can only dream that my son is able to post on that forum one day...

Yeah, the last thread I hit was people arguing over the term aspie, some saying it was hurtful, and comparing it to the word "n*gger". It was just so absurd. It's like they just want to be considered disabled. And I know that many have problems coping with things, which interferes with their lives, and maybe if I am in this group, I'm much higher functioning than normal... but I just don't know how much of that I can accept.

I want the diagnosis for myself, so that I know that I am that way. I said before that I've struggled with depression, but now I think I've had a few symptoms here and there that created problems in my life, and my frustration over not being able to cope with them, or express issues properly, caused me to shut down which mimicked depression well.

I'm hoping that knowing for sure will help me cope with some of my issues, but looking at my life... I have two beautiful boys who I love and love me, I have a good career that fits my needs well (highly technical, very challenging, extremely low social involvement), so I doubt I would even tell my employer of the diagnosis... there'd be no point, except attempting to garner some form of sympathy. I've been rated highly effective on my evals for the last few years, and right now my supervisor is using me to find ways to help my team rig their numbers in our new eval system. I like doing things like that, and I'm good at it. I know they view me as different already, because I don't fit in with the rest of the guys, but they all respect me because I'm the most technically savvy when it comes to our electronic systems.

I know that I'm lucky I found a job/career that suits me. But the "poor pitiful me" attitude is so strong over there, I think I'd be better steering clear lest they bring me down with them. But I'll give it another shot... maybe I'll find a nugget of wisdom in a cesspool of self-flagellation over there.

Well, it had been a long time since I last looked at Wrong Planet. I'll make a note to avoid it.

Here are a couple of sites I like:

Tiny Grace Notes (by an adult autistic woman who is part of the neurodiversity movement but obviously isn't driven by self-pity)

The Autism Self Advocacy Network

This group in conjunction with the AutismNOW Center just published a pamphlet for people with new diagnoses of autism. I haven't read it but have seen positive responses, so it may be worth the time.

Susan Senator's blog. She has a severely autistic son and 2 other NT children. All are adults. I think she is fantastic.

I am definitely an outsider looking in to the community, and since there are a couple of autistic adults in the thread, you will have better insight as to what's useful information or not.

Something else I have to remember is that the ND community is one that is capable of advocating for itself, but there are many with autism who can't. From what I've read and seen the range of people with autism is very broad and diverse so I think it's worth asking whether it's possible to generalize whether, e.g. ABA is always too harmful for the autistic child. But I just don't know. I thought the autism chapter in Andrew Solomon's Far From the Tree was really good overall, and discusses the range of autism WRT the ND movement specifically.

PurEvil wrote:

I meant for me. I've already got the ball rolling pretty well in terms of him. He sees a developmental pediatrician tomorrow, has his first sensory therapy session on Monday, and there are a handful of other things scheduled for him in the coming weeks. Just about every day off I will have will pretty much go towards helping him, sometimes with multiple appointments with different providers in different counties. I'm going to be a very tired dad, but I'll be damned if I sit around while he could be receiving some kind of help. Our early intervention team takes more of a parental coaching model, so my wife and I will try to both be at every one of them.

My apologies. You're right, I totally misunderstood your post. Nevertheless, I am sorry if I insulted or upset you in any way.

PurEvil wrote:

Yesterday we got a confirmed diagnosis of autism for Tristan. It's not something I thought they would do, I thought the visit would pretty much just be them observing and then giving us the "we'd have to see him more for an accurate diagnosis" type deal. Instead we got the, "oh yes, he's definitely autistic" response. Even with me being nearly certain, having someone voice it, and put that diagnosis to him, hit me like a ton of bricks. My wife asked the question about increased risk in future pregnancies if we tried for a third, and the 50x risk pretty much shoots that down. They brought out the DSM criteria for diagnosis and there wasn't really anything we could argue with.

Your boys are beautiful! Tristan looks like a happy kid.

Interesting that, despite your reported marriage difficulties, your wife would ask about future pregnancies. Perhaps there's more left in your marriage than you thought? Also, don't be too sure that you're the "source" of Tristan's diagnosis. No one has truly pinned down what the cause is. I've heard genetic, environmental, mothers' age and weight during pregnancy, father's age and weight. Drug abuse, technology in the home (wifi, baby monitor radiation, etc.). So many theories. Exploring the "genetic" route, my wife and I haven't been able to identify anyone in our families, both living and deceased, who have/had autistic tendencies.

concentric wrote:

By the way, we have a second child who by all indications is NT. It will be good for each to have each other. Alex benefits from the social interaction, and I hope my daughter will have an easier time learning empathy, which I think is one of the most important qualities to possess. They do love each other a lot.

Same here. My wife and I, even in light of the information on increased risk of a diagnosis on subsequent pregnancies, decided to go ahead and try for another child. Despite the risk we couldn't bear the thought of him being alone by himself after we inevitably pass on. After one miscarriage we had our daughter Maya (she's now 27 months) who doesn't even have the slightest hint of being on the spectrum. She's smart as a whip and is a social butterfly. And our son absolutely adores her. They're constantly hugging and playing together and seem to have a great connection to one another. When we decided to have a second child we had a hope of what it could be and we honestly could not have had it work out any better.

So regardless of what your future holds, PurEvil, if you are seriously wanting another child I wouldn't rule it out completely.

In regards to Wrong Planet, I pretty much stayed in the "Parents of..." forum. You can also try the autism subreddit. It's not tremendously active but it's there.

My wife and I have decided not to have another child. I have 2 older daughters (12 and 14) from a previous marriage who other than the usual joy of "teenagers" are totally NT.

We feel fortunate that Owen has the strengths that he does, and although it's going to be a tough go for the little guy, I think he will do well. We just can't bear the thought of having another child on the Spectrum, and the thought of another child who might be higher on the spectrum is frankly terrifying to us. It is going to be hard for my wife, as Owen is her only actual child... but she (we) love him so much that we want to be able to focus all of our energy on giving him the best chance.

FSeven wrote:

My apologies. You're right, I totally misunderstood your post. Nevertheless, I am sorry if I insulted or upset you in any way.

Hard to get insulted/upset by what would have been good advice had I been taking such a slacker view to my son.

FSeven wrote:

So regardless of what your future holds, PurEvil, if you are seriously wanting another child I wouldn't rule it out completely.

In regards to Wrong Planet, I pretty much stayed in the "Parents of..." forum. You can also try the autism subreddit. It's not tremendously active but it's there.

I ruled it out long before that. My wife and first born almost died when he was born due to complications, which returned in the second pregnancy. I seriously doubt her kidney's could sustain another pregnancy. There are some other issues that put her at extremely high risk if she were to try again.

And for WP, that must be it. I went to the general discussion board to get a feel of the site. Just looked at a little of the Parents forum and that looks a lot more helpful. I check out /r/aspergers already, so I'll check out /r/autism.

Wondering how everyone deals with the dreaded "haircut".

Owen who is about to turn 3, and by for the most part is making great strides with his transitions.

We have been putting off a haircut for quite a while, as the previous episodes have been far from enjoyable.

I decided that today I would head to Walmart to pick up a few things for dinner. We are trying to expose him to short, manageable outings to the supermarket to get him used to these things. As I was getting ready to go, I thought we might as well get his haircut while we are there, as they don't require appointments and you don't usually have to wait. I loaded up the IPAD and some snacks and off we went.

The ladies were very understanding, and I explained right from the get go that he is autistic, it would be a challenge and just do what they can. Before we left, I showed him a few videos on youtube of children getting their haircut and some pictures as well hoping that it would smooth the episode.

Needless to say, as soon as we got there he started saying no but I put him in the chair anyway. He hated the cape, and I told her not to worry about hair getting on him. I played Dispicable Me on the ipad, and fed him some of his favorite snacks. He was eating hair as it landed on his snacks but I didn't care I just wanted it done. To be honest, he wasn't too bad but occasionally he would freak out and try and grab her hand but we got it done. Owen and I were covered in hair.

Please tell me this gets easier! I'm hoping that this age (2-3) is the most difficult, as it's hard to reason with him. As a sidenote, the shopping was fine

Oh what a coincidence - Alex is getting his hair cut today, but in a salon this time. Up till now a family friend has done it. On the whole, actually, it sounds like it went pretty well for you and Owen! It is getting easier for us over time. Alex will turn 4 in early May.

Since the situation is different, I've been talking to Alex about the haircut and have been showing him what it will be like, for example running my fingers over his head and pretending to cut his hair. And he will have his choice of a cookie or a doughnut if he is good. He did about as well as I could have expected at his first dentist visit last month, so I am hoping today will go decently well.

Oh the Dentist.. that is stuff of nightmares for me. I can't even imagine, and I worry so much that he will have cavities or something. We are as diligent as possible at brushing his teeth, and for the most part he is pretty good.. but I'm never sure how clean we get them.

We went to the pediatric dental practice at the Center for Disabilities and Development at the Univ. of IA. I don't know if there's anything comparable near you. What a relief that Owen is good about letting you brush his teeth. Alex loves it, and that definitely helped when the dentist checked his teeth.

Round 2.

This time I'm in the waiting room while the eval doc interviews my mom (who is in town for a few weeks anyway, so they're able do it in person instead of on the phone). I think after this she has everything to... render her verdict or whatever.

My son struggles through haircuts and we have yet to do a decent job brushing his teeth. He just has no understanding of needing to stay still... It's not even a sensory issue.

My fear that he is intellectually disabled and will have a hard or impossible time gaining even the most basic of living skills continues to grow. Social stories, rewards, distractions like IPad... my son is currently cognitively incapable of getting anything from these strategies.

Also, he has been slapping his head more and more. It's to the point that I wonder if the repetitive trauma, although mild, could eventually result in some low level brain damage. Not that his brain might not already be scrambled by autism anyway.

Sorry to be so negative. Severe autism really sucks.

gewy, how are you and your wife doing with all this? I'm thinking about you and your family.

We're maintaining an adequate level of functioning but there isn't much joy in life these days. Sometimes I get slightly hopeful without any concrete reason: "He's so young", I tell myself. Or I read some story on the internet that makes me feel better, more confident. Those stories are getting harder to come by though. I would kill for some sign of progress.

Actually, there has been some slight progress recently. He has gone from averaging 30% success rate to around 60% success rate on his ABA trials. I can't feel too great about it though since after 6 months, he's still on step one and what they're having him do is so basic it should be almost instinctive. Things like getting him to open a book or shake a maraca when they put it in front of him. Useful adaptive skills and language still seem so far away they might as well be on the moon. Also any positive feelings about that have been much overshadowed by the self-injury, which is relatively new.

I'm glad to hear there is some progress, and it sounds like you and your wife are less depressed. I would have a very hard time seeing my son hurt himself, however. Are his therapists providing any suggestions to reduce it? I just talked to a friend who has cared for many adults with disabilities, and she suggested gathering data to see if there are triggers for it. It may be self-stimulation, or it may be a result of anger or discomfort. Depending on what you find, brushing to help calm him or redirecting if it's when he's angry, for example, may help. My son's habit is sucking his fingers and putting his finger in his (or my) bellybutton when he wants to calm himself down. We're still trying to keep him from just sticking his hand up my shirt to do that.

I hope you continue to see progress. By the way, I didn't know until I had children that many who don't get much exposure to books have to learn how to hold them right side up as well as turn pages. My son also has needed a lot of guidance in music therapy to do things like play drums or shake maracas. We're about 9 months in music therapy, and it's really helping him with physical coordination and a lot of other things too.

The last few weeks have brought a lot out of Tristan, even with only a little therapy. He's becoming more affectionate, and it's really sweet when he grabs someone's face and starts planting kisses all over them. We've also been seeing him attempting to sing along with music, and talk along with movies he knows, even though he's not really completing the words. One of the songs he likes is "Monster" by Eminem/Rhianna, and in the chorus when she draws out a word, those are the ones he tries to sing. He's anticipating them well enough that he's getting the first part of the words right (will say breeaaaa for breath, bbeeeee for bed, etc). I know it's going to be a long road, but seeing improvement this early really has me excited.

I think music is going to be our best asset. I know I get a lot more focused when I have something to listen to or sing along to, so I'm not too surprised to see this from him. We're trying to get him comfortable with a compression vest, and the only time he won't throw an absolute monster of a fit is when I have one of those music videos going. Oh, and my wife told me that he picked up a wii-mote wheel (the kind that came with MarioKart) and played with it appropriately the other day. He was running around, making engine noises, and hitting the middle going "BEEP BEEP".

That's awesome PurEvil. I was astounded at the progress that Owen made when he started therapy, even part time until we wait for him to get accepted into the ABA program. Owen's speech is his major stumbling block, but he's making amazing strides like using 3 words to ask for something. This was a kid who 6 months ago couldn't even say Mom. He too only says the beginning of each word, but by repeating the proper pronunciation he is even starting to finish off some words. It became second nature for us eventually, and our pediatrician says we are walking therapists, lol.

What really warms my heart is how much better he is becoming at transitions, and some of the steps he is taking socially. Now when confronted by another child who he doesn't know, he will often say hi. It usually ends at that, and he's off doing his thing but at least he looks them in the eye and greets them.

Good luck, sounds encouraging!

Good news from both of you! Alex is also making good progress. In preschool, he's had one of the classroom paraeducators working one-on-one with him for much of the half-day of school. In addition, the district has started him on the STAR program, which I've heard good things about from the people at the Univ. Autism Center. He's interacting more with peers, but will still most likely be on an IEP next year. As of February, he could name only 5 of the 15 students in his preschool class, so we're not talking about a lot of interaction. But this will improve, I'm sure. At home we are singing songs and playing "hug monster." He loves the deep pressure from that. We're also working on having him recognize words. He can spell and write his name (and is very proud of that).

Good article in the newest New Yorker by Andrew Solomon about Adam Lanza, who had an Asperger's diagnosis, though that was most likely not related to his decision to commit the killings in Newtown. Andrew Solomon is going to speak at the university here this April, so I decided to mention the article to students in my morning class. And a couple came up afterwards to ask about the article - one a person with Asperger's (he's not receiving an accommodation, so I didn't know of this), and another who is getting a teaching degree and taking a class on special education now. It's amazing how many people have connections to others with disabilities.

I'm jealous of you guys! Must be nice to see such clear progress.

Our son's sleep continues to be an annoying issue. He's waking up routinely around 2-4 am now and running around his room for a couple of hours then falling back to sleep just before it's time to wake up. Also he's staying up later and started resisting bedtime again (well, resisting being picked up in general).

I bought some melatonin and think some time this week we might get desperate enough to try it. We'll see how that goes.

Sleep is a big problem for us too gewy. I want to try Melatonin, but my wife is reluctant. I'm going to run it by the pediatrician when we see her next month, although I know from speaking to others that she is definitely a proponent of it.

Poor Owen has got chronic constipation (something I understand is common in ASD kids) so he gets laxative every day. I think my wife is reluctant to start a lot of meds.

Another article in the NY Times. Good comments. I think I might try some of the techniques this family used with my son.