[Update 2/20/2009 - We're now releasing an update to this post in a series called "What's Your Autistic Toddler Like Now?" Read this post here first, and then go forward in time nine months and see what happens next!]
With some regularity, conversations come up about what ‘autistic stuff’ J-Man does and doesn’t do. I know some of these are stereotypical traits, but many of these come out of evaluations and the various ways we’ve tried to figure out his diagnosis.
So for the benefit of our readers who are wondering whether their kid is similar to ours, here’s a description of him and what he does, kinda does, or doesn’t really do. We’ve been recompiling this for his upcoming (re-)evaluations and preschool/IEP stuff, so we thought we’d share.
Obvious disclaimer: This isn’t a substitute for having your child evaluated. You are parents and you know your child better than anyone. If you suspect there might be a problem, trust your intuition. We are not advising you on how to evaluate your child. Go get them evaluated. Don’t just rely on some random people on the Internet. You’re smarter than that.
Reminder – he’s a bit over 2 1/2 years old. A doctor (psychologist with a bazillion years of experience at evaluating kids) diagnosed him with an autism spectrum disorder. He said that at J-Man’s current age, labeling him with “mild”, “moderate”, or whatever wasn’t terribly useful and likely to be inaccurate. He’s also been diagnosed with sensory processing (or sensory integration, depending on who you talk to) issues, apraxia, and motor planning issues, among other delays.
Significant issues he has:
- Severe speech delay – Obviously, yes. We figure he’s going on 18 months behind. The belief is that he has apraxia, which isn’t at all unusual in autistic kids.
- Communication problems - Struggles to communicate in other ways, too; sign language, etc. isn’t in his repertoire. Unless he can pick it up and bring it to you, he has a very hard time asking for things. He also will use your hands to do stuff rather than his own, which is something we discovered is a characteristic of autism.
- Rarely points at what he wants – That’s pretty self-explanatory. He tends to use much more broad movements, which are very difficult to figure out.
- Hand/arm flapping – Flaps his arms when he gets excited or overstimulated. Primarily he does this in the car (the moving scenery apparently is too much for him to take in) and in places like the store (especially ones like Target that are bright, busy, and red). It’ll also happen if he’s watching some TV show that gets him excited. Interestingly enough, he usually looks happy while he does it. The suspicion is that this is a lot of ‘sensory overflow’ and doing this helps him order and calm his system.
- Learning problems – We don’t know cognitively where he is because he’s hard to engage in those sorts of activities, but he definitely does way better at puzzles and things like that when he’s calmer. We suspect he knows a lot more than he’s shown.
- Eye contact – Pretty poor, but it seems to be getting better lately. We can get a few seconds of it with people he knows well, not so much with strangers. He definitely is better with this when he feels pretty balanced sensory-wise.
- Sensory problems – Oh yeah; feeding, vestibular, proprioceptive are the biggies. We’ve known he’s had sensory integration issues since forever, and they still affect him a lot. The last couple of days he’s taken up sucking his shirt to soaking again. Yuck! He still loves exaggerated movement (throw over your head, swinging outside, bouncing on the exercise ball) and seeks out deep pressure (big hugs, firm back pressure). He also sleeps wedged in the corner of his bed and was a total swaddle baby. He finds sticky or slimy stuff on his hands really icky (finger paint = yuck). He dislikes most food textures, and will gag at ones he really hates. He’ll sometimes gag when he’s sensory overloaded regardless of what negative sense it is.
- Seriously picky eater - Eats just about nothing except toast, chicken nuggets, crunchy stuff like chips, and purees. He also has some reflux, but that’s minor at this point so I doubt it affects much here. No other GI issues have been indicated.
- Lack of imaginary play – He doesn’t really engage any of his toys in this way; he can be playful with others but I wouldn’t really call it imaginary, nor would I call his play with his peers consistent or much like what you’d expect for his age. His level of play is very cause-and-effect, meaning he presses some button and the toy does something back at him. It’s a much more literal way of interacting, which is another common autistic trait.
- Social awareness – He usually doesn’t acknowledge other kids in the room, but he’s pretty good with adult women (he’s pretty flirty). At preschool, he’s typically off doing his own thing.
- Joint attention – The fancy term for wanting to share with you something he finds very interesting. Example: Child sees a car, picks it up, shows it to you, and then looks at the car and then at you to make sure you are seeing it with him. J-Man does this very rarely, which is another characteristic of autism.
- Responsivity to order in learning – This isn’t so much an issue as it is a common strategy for autistic kids, but he responds very well to doing his ‘learning work’ in an orderly environment, at his little desk, doing specific tasks, without a lot of distractions. Imposing structure has dramatically helped out with his learning and growth.
- Travel – One or more nights away sucks; in the car is normally fine; he just won’t sleep well at all anywhere else but home – two nights away is pretty much our limit before everyone is sleep-deprived and mental.
- Fine motor issues – He has a very hard time manipulating certain objects; e.g., hard to feed himself with a spoon without a lot of help, though he has made great strides in the last week.
- Motor planning – He has a hard time figuring out how to accomplish many tasks, and only occasionally will successfully do something you ask him to do. If it requires a sequence of more than a couple of steps, he pretty much can’t do it yet. “If you’re happy and you know it stomp your feet, clap your hands, and shout Hooray!” is incredibly frustrating for him. You can see him trying to work out how to do it, but his body won’t comply. Yes, it really pulls at my heart to watch him struggle like that. We’ve wondered whether this has made sign language nearly impossible for him; we’ve been trying for over two years. That said, he has made great strides (literally) in the last week or so in going up and down steps by holding on to a railing or your hand. This is a major leap forward for him.
- Responding to his name – This is sort of borderline to me, but he doesn’t do this that well; it’s not so bad we can’t work with it, though.
- Walks on his toes – Yep, but usually only in short intervals.
- Poor muscle tone in his trunk/core muscles – In his arms and legs, he is as strong as an ox on steroids, speed, and Starbucks, but he ain’t going to be on 8-Minute Abs any time soon. Related stat: I weigh 225 and he has knocked me flat on my butt from standing.
- “Flight Risk” – If you put him down, he’s usually going to take off running. We’d never be able to set him down in a store or a mall. If we did, he’d be off to the races. This happens outside too. It’s exhausting to say the least.
Issues that aren’t too bad:
- Fixation or attachment to a particular object – He was pretty attached to Glo-worm and his Leap Frog caterpillar early on, and now he’s pretty fixated on his piano keyboard and other things that make music, along with some of his books. He can get pretty zoned out on them, but not so bad that you can’t break him away from it with some effort or that he doesn’t get up eventually and go do something else. We do have to sometimes hide whatever it is so we can keep him focused on us enough to do his therapy work when the zoning out gets to be a problem.
- Emotional awareness – He’s pretty good with understanding people’s emotions, especially when people are laughing or are sad.
- Sensitivity to routine – We do keep a routine, but mostly out of habit from back in the days he wouldn’t sleep and because it helps him learn better; we can vary it without any real issues as long as we’re not out of town and as long as we give him some downtime in the afternoon.
- Needing physical order – It’s very important to him to have all the doors closed wherever he is. This is annoying sometimes, but not a big deal in the grand scheme of things. I’ve noticed that there are a couple of toys he wants in the ‘right place’, but why these few and not all the others is a mystery to me.
- Sleep issues – Rarely naps anymore but does sleep through the night (12 hours on average); this is SUCH an improvement over the first 18 months when he never slept through and often got up every 2-3 hours.
- Gross motor – He was a very late walker (almost 23 months) so this used to be a real problem, but he’s pretty self-reliant with this now even if he’s still a bit behind. He definitely has his own style, but he rarely falls. Going up and down steps upright (though still with a lot of help) is a recent highlight. There are a lot of steep stairs around, and heights freak him out, so this is a real challenge.
Issues we haven’t really seen:
- Regression – His development has been very slow on various fronts, but he still has steadily improved. We have setback weeks from time to time, but our overall trajectory is toward improvement. He didn’t have a bunch of words and skills and then lose them like some.
- Self-destructive behavior / self-injury – He’s smacked himself in the head a few times, but nothing at all that we’ve worried about. I can’t even remember the last time he did this.
- Uncontrollable tantrums – Never; he does a great job dissipating his frustrations and rarely pitches a fit for more than a couple of minutes. He does some pitiful drama and then we move on.
- Repetitive behaviors – Very little except for the hand/arm flapping.
- Lining stuff up/compulsive organizing – Pretty much never. Our house is often a wreck and he doesn’t seem to care. Like I said before, he has a couple of things that seem to have a ‘right place’, but it’s so minor that it barely registers as anything more than a quirk to us.
- Fixation on orderliness – Doesn’t seem to care if we move stuff around.
- Detachment – He’s very attached to us, loves being with us, and often wants to be held. If you’re familiar to him, he’s very loving. He’s hit or miss about strangers, or even acknowledging that they’re there.
- Aggression – We’ve had it repeated to us several times that an aggressive act is not the same as aggresion. He’s so fidgety sometimes that he can be rough as he rolls all over you rather than sitting still. That said, he hasn’t struck out in anger that I know of.
- As far as we know, his hearing and vision are fine based on previous tests.
Phew. Got all that? We’d love to hear how your child is similar or different from this. They don’t call it a ‘spectrum’ for nothing, and there’s so much for all of us to learn. I didn’t even cover a bunch of stuff. If you have questions, feel free to ask!.
Posts that hopefully are similar:
- What’s Your Autistic Toddler Like Now? (Part 1)
- What’s Your Autistic Toddler Like Now? (Part 2)
- What’s Your Autistic Toddler Like Now? (Part 3)
- The quest to find our own asses begins
- Giving Thanks for Therapists – A Season of Transitions
- Shining More and More! Quarterly IEP Report
- All the Good Things
{ 19 comments… read them below or add one }
I came across your article/website and I am intrigued with how well you have described everything here relating to your little boy and his autism. I am curious about our 15 month old and some of the little quirky things that he does…. or doesn’t do. He is seeing a neurologist on Monday that he was refered to by his pedi at Kaiser, mainly because his vocabulary is not 3-6 words in context and he’s not walking yet….. he really just started crawling in the traditional sense at 14 months – but up until that point he seemed to be doing everything else on ‘schedule’….. I would really love to discuss more with you, but it’s late and I want to go and exlore this site further.
Thank you for your time.
Excellent description of J-Man!!!
Our P-Bear is identical to J-Man and Denise’s son . Have you seen his fetal heart tracing report from the hospital at time of delivery? I think there might be a common link. We were told nothing of the fetal distress during labor and delievery until we asked for the report.
P-Bear is responding tremendously to a floor-time therapy program. He is flirty also with the girl therapist. The structured activities have proved valuable. He is now 28 months.
P-Bear was diagnosed as on the Spectrum at 20 months. At that time, his vocabulary was maybe 2 words. Didn’t understand words. No pointing. Not responding to his name. Low tone also. Started crawling at 12 months.
P-Bear never has thrown tantrums, has very little repetitive behavior, seldom lines up stuff, is very attached to parents, swaddled infant. etc. He NEVER regressed – just stopped progressing until therapy started. He’s a very picky eater. Identical to J-Man. (except that P-Bear travels well and can sleep anywhere – he tires and wants to go to sleep)
Good news! His therapy is working. A new developmental pediatrician wonders whether he really is on the spectrum, because he seems “eager to please” which is not an autistic trait.
Perhaps our toddlers have a something very unique.
We’ve been searching for another toddler with similar attributes. More later
At the exact moment of delivery, no we don’t have that report, but I do remember watching the monitor almost until then. J-Man had – at least from what little I know – a pretty normal fetal heart rate (dipping during contractions, but nothing drastic). As I understand it, you can tell when a baby is getting ‘tired’ by how far the heart rate drops during contractions and how well he/she recovers in between. If that’s accurate, he handled it well. My sister works Mother/Baby at a hospital so I’ve absorbed some knowledge from her. He didn’t strike me as a baby who was ever in any significant distress.
We had a doula who watched everything like a hawk and practically narrated the process for us. If we had missed something, she would have told us. She was a great teacher to us. Plus, once Mary started pushing, she got him out pretty quickly.
She was induced so obviously he was in no hurry to get out before that (he was 41 1/2 weeks). I watched the monitors to follow her contractions so the doula and I could anticipate them and do pain/pressure-relieving things for Mary as best we could. All the indications we got were that there were no complications beyond a little excess fluid in his lungs. They kept him in the nursery two hours and that was it.
Structure has really helped him a lot. We’re working on developing this hybrid of TEACCH/Floortime/ABA for home use. Floortime is lower-key for us than other approaches, which works great when we can tell he’s too stressed for the heavier work. It’s also lower stress for us.
We have this sturdy, heavy, wood, kid-sized desk that we use for the structured work. The solidness of it helps anchor his sensory system. He does much better at more complex activities at the desk than on the floor, but he also likes being at the desk a lot less, which can add to everyone’s stress levels. About 10 minutes is our limit at the desk, which is still a good number. We just let him get up and walk around for a while and do it again. I think structure has to be a major component of what we do, as you’ve already mentioned.
Our developmental therapist has given us a bunch of new ideas for desk work and expanding how we employ structure. I’ll try to describe those in future posts. I’m still trying to figure it out myself! It’s been a crash course in various forms of therapy, that’s for sure.
J-Man digs the ladies too. It’s a good thing all of his therapists are female!
It does sounds like we’ve been on similar paths. I’ve heard similar accounts from other parents, so many days I feel like we’re somewhere in the typical-way-this-progresses category. Of the people I’ve talked to, the perception that their child did not regress seems to be a bit more frequent that those who think their child did. I offer that for whatever it’s worth as I’ve learned to avoid basing things on anecdotal evidence.
A sort of related aside – someone had an excellent suggestion that parents of autistic kids should go back and watch old home movies of them when they were little and review them. Sort of like game tape for football players, maybe. I’ve started doing that some and picked up on things I only understand now with all the research I’ve done. It’s confirmed my certainty that this isn’t something that just popped up one day.
The fascinating thing to me is that you can get ten autistic kids in a room and all ten will be different. That’s a big part of what makes all this so hard to understand.
So much of it is a mystery, but this is how we start to figure things out. We connect, we talk, and we learn!
Thanks!
Heh. I realized I had e-mailed back and forth with Denise and never actually posted any public reply!
If this excerpt of my e-mail to her is useful to people, here it is.
—
If my advice is worth anything, start building a team of professionals you trust and who have your child’s best interests at heart and invest yourself fully in them. I know this raises big $$$ signs in your mind. If you have good insurance, there are creative ways to get a lot of this covered. County and state services can also help a lot on this as well (esp. Early Intervention).
Also find other parents who are going through similar struggles – or who have gone through them – and develop relationships with the people you trust and who affirm you and your child right where you’re at. I may be saying something inappropriate here, but I think if the second sentence out of someone’s mouth to you is, “Such and such cured my neighbor’s son. You should try that!” – run. This will happen a lot. It happened a lot before we got the autism diagnosis and happens even more now. As my wife puts it, I smile, nod, and listen to the music in my head.
Remember, you know your child better than anyone else. After you read and listen and talk and research and do all of that again and again, you will learn enough to be able to critically evaluate what someone is telling you and whether what they’re saying is brilliant, useful, suspect, or just full of it. This is a vital skill to develop.
There are advocates for various methods of therapy and treatment who are very emotionally invested in them, and some of the ones I’ve met look at me aghast that I don’t follow their approach. Why don’t I? Because I may think that’s not appropriate for where J-Man is, or that the science behind it hasn’t been tested enough to know whether it works or is safe, or I may just find it silly, or a myriad of other things.
At least in the ‘autism world’, there’s so much drama and zeal and politics about treatments and therapies and cures and whatnot that it can be overwhelming to anyone, especially people who just got the diagnosis. This is a long way of me encouraging people to learn and think for themselves, which will serve us all well regardless of what kind of diagnosis our kids ultimately receive.
So, of course, in my next sentence, I’m about to tell you something to do if you haven’t done it yet. If you haven’t made contact with your local Early Intervention program, talk to your peds about that immediately or initiate contact with your local EI program directly. Your tax dollars pay for it and it can open all sorts of doors. It can also save you boatloads of money too and make getting into county preschool services way simpler when he turns three if he still needs those services then. I don’t want to harp on something you may already be doing, but if this is new to you, I’m happy to tell you what all I know, however much that may be.
Well, I’ll give one more short piece of advice – throw away “The Schedule”. It’ll make you feel better after a while. Your child is on his own schedule at the moment, one that’s just right for him at this point.
That’s a hard thing to incorporate into the parental brain. But J-Man has taught us patience and the value of doing things when he’s ready to do them. That doesn’t mean we don’t work at it and push him, but rather it’s about accepting him for where he is right now and giving up the yardstick kids are measured by developmentally. That sounds drastic as I read back over it, but for us at least, once we left the chart behind, I found it easier to focus on him and his needs and what he responds best to and not worry about all the other pressures those schedules induce.
—
Thanks, Denise. I’ll e-mail you again soon. Promise!
Hi,
Yes, you’re absolutely right. When we see photos of P-Bear at birth…the way he’s lying…you can tell he has “low tone”…yet his pediatrician didn’t notice it. (long story).
P-Bear was “induced labor”, too. Believe me…I think there is a link “somehow” to this. We’ve had every kind of blood test possible . I think it is something in the environment at the time of birth. Something.. When we got the fetal heart tracing , it showed trauma in the last 8 minutes before delivery( we weren’t told) . My gut feeling is that our kids with “low tone” don’t really have autism. They are too loving to be autistic,but the low tone causes the symtoms. (P-Bear has had 3 diagnosis of being on the spectrum from Pdd-nos to autism – but now a 4th doctor questions it) Honestly, I have great hope that with therapy – our toddler’s specific symtoms can be helped tremendously with early prevention.
Our tax dollars in our community are totally wasted. We have spent over 100 hours begging for help…but they lost P-Bear’s evaluations…and keep giving numerous excuses for being absolute flops at everything. P-
Bear has not received “any kink of help at all” from our city – or Fulton County. We’ve taken off work and waited for them several days. We’ve driven to their offices and begged for help. It’s now considered a total waste of our time to even try to acquire government help. We’re in the City of Atlanta…. if anyone has pull….we’ve waited from July 2007 until June 2008 with absolute chaos in the
Atlanta/Fulton Cty assistance for toddlers with autism. They have done nothing period.
Yet, we’ve paid through the nose and gotten P-Bear therapy and he’s thriving. Thank goodness. I think he’s going to be a success story. He’s absolutely the cutest and most loving toddler.
Judith,
I can only speak with any degree of authority about my own son’s situation, but from talking to therapists, other parents, and researching, it’s my understanding that low muscle tone (specifically core trunk muscles as the autistic kids I know are strong as oxen in their arms and legs – and J-Man could knock me over and I weigh 225 pounds) is but one attribute that may or may not be a part of a child’s autism diagnosis.
In other words, a child with autism may have (or often has, I’m not sure) low core muscle tone and a child without autism also may have low tone. That alone doesn’t make them autistic, even if it’s a common attribute. I believe muscle tone didn’t make it into the DSM-IV for diagnostic purposes, but I can’t remember.
We were told during evaluations and such that children diagnosed with an ASD have to have a number of things that are true, but not necessarily all of them. What I’m about to say is a gross simplification, but let’s say for the sake of conversation that there are 20 possible attributes of autistic kids and kids diagnosed as ASD have to have some combination of 12 or more, with some more important than others. If the kid has low core muscle tone, then that would be one, but there would have to be many more things that are true to get the diagnosis. Not sure that makes sense. Like I said, that’s a gross simplification of the diagnostic process, so excuse my sloppy thinking.
A couple of other examples – speech delay is one of the main distinctions between autism and Asperger’s, with Aspie kids being at or ahead of the curve for their age and autistic kids being significantly or severely behind in talking. Some things are more distinctive than others in figuring these sorts of things out.
On the issue of some characteristics being more important than others, things like little eye contact, lack of pretend play, lack of shared attention, etc. seem to get more weight in an ASD diagnosis than being a picky eater or not adapting to travel well.
I don’t know much about how ‘fetal distress’ affects kids in the short or long-term. It’s just something I haven’t researched. There is so much conversation about causation and risk factors for autism that it’s turned into one, giant, confusing mess to me. There’s just so much to learn! I’ve strongly resisted drawing broad conclusions from what J-Man has or hasn’t experienced, etc. Studies of large enough populations of kids are important in order to be able to draw conclusions, but sometimes we have to feel around as best we can in order to understand where to go next. There’s just so much we don’t know, and it’s hard to know how to find out answers to our questions and theories.
It’s been my experience that autistic kids are very loving, though some express it outwardly to greater degrees than others. With J-Man, it’s been a function of familiarity with the person. With us he is very affectionate, sweet, and loving. With close relatives, he’s a lot the same way. With other people he sees a lot, he’s somewhat less expressive but still very kind. With strangers, he often just ignores them. They don’t really register in his world. It’s more my experience that autistic kids are less likely to interact directly with peers and engage in shared activities with them (though they may watch and enjoying watching them – watching being the key word). I know I’m somewhat biased (!) but many people think J-Man is one of the sweetest and kindest kids they know. He just doesn’t interact much with his peers and mostly does his own thing in school.
I sympathize with you. I used to live in Atlanta (in Dekalb not Fulton) and couldn’t imagine having to fight with Fulton Co. for anything. Dekalb was annoying enough. I applaud your commitment and determination. We do what we have to do and pay what we have to, but it shouldn’t have to be that way.
I agree that with therapy many kids – ours included – can see significant improvement. I’m a big believer in educational and behavioral therapies. They have done wonders for him. They are costly and you have to fight to get them covered, but I find it hard to overemphasize their importance.
On a side note – I hope people will hold candidates for President and other offices accountable to issues related to health insurance reform, fully funding Early Intervention and other prevention programs, fully funding IDEA and other education programs, and so on. This year feels like a great opportunity to make some progress there! None of us should have to pay out the nose for this!
Good luck. Keep on fighting and learning. Your son is lucky to have such a fighter on his side!
Tim,
I found your list of issues and descriptions quite interesting and helpful. I have a 15 month old daughter with some sensory processing issues, mostly related to oral stuff (never mouthed toys, only started eating solids recently, bf difficult to establish but now refuses anything but). She is very affectionate and makes great eye contact and so we are constantly told that she doesn’t have autism/aspergers but there are other things that she does that make us wonder, i.e. flapping of arms, doesn’t respojd well to her name, etc. I’ve decided to treat her as if she may have something else besides the spd and let her schedule guide us. I’m reading the out of sync child right now and am vigilant. I’ve also opted not to get her MMR vaccines for the moment as I’m just not convinced of its safety yet. I live in Canada and so far in Toronto, I’ve been able to get the occupational therapy I needed for her oral issues free and with little delay. She is a joy to have around and I hope that I get the help that she may need in the future. The comments made by Judith regarding the induced labour and fetal distress were quite interesting as I was induced and my daughter had the cord wrapped aroung her neck at birth and we’ve never seen the tracing. Hmmm…
Anyway, I just wanted to thank you for your site.
Cynthia
Cyn,
15 months is a hard age to understand what all is going on. It’s difficult to find any tests or questionnaires that offer much insight until they’re several months older. Even at 2 1/2, the doctor said this was near the lower limit of where he felt the diagnostics were accurate enough to do with confidence. Still, that doesn’t at all mean that you shouldn’t be keeping an eye out and learning all about your child. It’s a process you can’t really start too early.
That obviously makes this a difficult period for you. It was for us. What you’re describing about your daughter sounds very similar to where J-Man was then, but that in itself doesn’t mean your daughter is autistic. Every kid is different. A lot of autistic kids have SPD, but a lot of kids with SPD aren’t autistic. This is why it’s all so confusing!
Out of Sync Child is a great resource. There’s a lot to learn about this, and with SPD being a fairly recent discovery with a lack of official criteria for diagnosing it, it’s hard to know exactly what’s going on.
Mary was induced but there’s no indication of any fetal distress. I haven’t seen the research on this, so I can’t comment intelligently about it. Given all the research of varying quality about everything that may or may not cause autism, it’s hard to really find out the answers to these important questions using information you know you can trust. There’s a lot we don’t know and understand, but it seems like at the rate we’re going, we’re understanding less at an even faster rate these days.
It sounds like you’re doing the right things and taking the right approach to it, if my opinion counts on that.
Staying open to the various possibilities is stressful, but in the long run you’ll have a much clearer sense of what she needs as a result of all your efforts.
Thanks for writing and your kind thoughts about our site. Keep visiting! And let us know how things progress. Our hopes for the best for you and your daughter.
How I envy you for the support system you have! I have a 2 year old daughter who exhibits symptoms of autism. Or at least, those that came from readings articles and blogs on the subject. Here in the Philippines where money is very, very tight and resources are even tighter, we do not have therapists and facilities that are within our reach. So, we have to suffer while we see our little baby continue acting like an infant.
She can walk and run well but she always seems to be hyperactive outside of the house. She, too, has a flight risk. very frustrating and very tiring, to say the least. Hand flapping, no words yet, no eye contact, the big hugs. While reading your description of J-Man I felt so hopeless because we might never be able to see improvements, only regressions, in my baby.
Mahal,
Thanks for your perspective, and I know “I’m sorry you have to go through this without much help” doesn’t help you much, though I am sorry.
If this helps a little, I posted something a while back that talked about some things I suggested doing if you suspect your child has autism. (http://www.bothhandsandaflashlight.com/2008/08/11/five-things-you-can-do-if-you-think-your-child-has-autism) I think the M-CHAT evaluation (listed in that post) that you can do yourself might help you begin to clarify some things with your daughter.
In the Internet age, there needs to be a central place online where people who live in places without access to resources can learn what they need to know to help their children, even if they have to do most of it themselves. There are some web sites that try to do a piece here or a piece there, but if there’s a central place to find this information, I don’t know where it is. Sounds like something we should be working on.
The good news is that you can learn to do a lot of the kinds of things you need to do with your daughter yourself. The bad news is that this takes a big investment in time and effort. We have learned everything we could from everybody we’ve ever talked to. We’ve asked every question we could think of to every professional we’ve worked with. We’ve asked questions all over the Internet. We’re read out our public library, half of the bookstores, and even a handful of college textbooks.
I say all that because the formula for getting through this involves a lot of learning everything you can and then having the confidence that you can do these things at home yourself. Last year when our son was 2 and just diagnosed, we felt like complete idiots. It’s easy to feel paralyzed and hopeless when you don’t have any idea where to start or what to do (we certainly did) and when you feel like that, you certainly don’t feel qualified to work with your child with the level of skill you think they need. But as parents, we can do a lot more than we often think we can.
Your last sentence is one we know well, and one I think every parent in our situation knows. We watch our children struggle, and they don’t seem to improve, or if they do, it happens so slowly. We watch them and have no idea what to do to help them. And they are our babies, and it kills us to watch them struggle that hard.
If it helps you any, our son has improved so much since I originally wrote this post six months ago. I’ve been slowly working on a 2nd edition of this post to update his progress. This has involved a lot of hard work, and we have benefitted greatly from the help, support, and kindness of others. We know not everyone has that kind of support, though. I don’t know the kinds of challenges you are facing, but just knowing they are much greater than the ones we’ve experienced, I couldn’t begin to imagine what that’s like for you.
I know we have many things easier, but I hope this is still in some way helpful to you. Your list of things to do will be much longer than ours, but I think we all have to deal with those lists in much the same way – one thing at a time. I know that I feel the most helpless and hopeless when I try to think about the whole list at once or think about everything that may or may not happen over the next several years. It’s just too much.
You can only do the best you can, but I think you’ll find that your best is a lot more than you thought you would be able to do. Reach out for as much help and support as you can get, learn as much as you can, and do what you are able to do. If your daughter is anything like our son, you’ll work at it for weeks and months and feel like real improvement is never going to come, and then one day out of the blue, it does. That renews our energy, and we start on the next thing.
I went through a long time of feeling sad and angry and hopeless and depressed and confused and frantic and completely overwhelmed. And it’s not like I don’t feel at least some of those a fair amount of the time now. But I guess one day I decided to try to find one thing I could do for him right then, I did it, tried to find the next thing I could do, and then have slowly kept going from there.
I feel like I’m trying to write my way to something I can say that will be of some help to you. The truth is, this is hard. And for some people, it’s a lot harder still. But maybe this will count for something.
Before J-Man was born, I can’t say that I was a terribly optimistic person. I usually didn’t believe things until I saw them happen. Finding Mary and us getting married had already changed me to my core, and all for the good. Still, a big part of me remained affected by this sense that I was meant to do something, but I could never figure out what it was. Then our son was born.
J-Man has taught me to believe in the goodness in things I can’t see yet, the “hope in things not yet seen.” He was the one who taught me how to hope and be brave. He has showed me how things get better through hard work and courage. He has taught me to take nothing for granted. He has taught me how to see things – like the beauty of the little holes in leaves – that I would have missed without him. He has taught me to see how beautiful and wonderful all the children are who others in our society devalue and think won’t amount to anything. He has opened my eyes and ears and especially my heart. He simply has made me a better person.
I write all this because I think your daughter will teach you the same thing. You will teach her and she will teach you, and somehow it works. I know it’s easy for me to say this without having to face the challenges you do, but this is something I truly believe.
I don’t know if any of this helped. I hope something here did. Either way, I do hope it gets clearer and easier for you and your daughter.
Wow…Wow….Wow…..
I am so glad that I found this. My son is now 2 1/2. We are struggling knowing that he is on the spectrum, but also knowing that many people (who see him for an hour or so at a time) think that we are over-reacting. (I know I’m not, but I hear constantly, “All 2 year olds do that sometimes.” Yes, sometimes, but not constantly!!!
Anyway, your description plus or minus 2 traits, is my son. Mine does some “autistic” things that yours does not, and yours does some “autistic” things that mine does not or rarely does.
We have even gone as far as having him evaluated twice by different doctors who use different tests to be sure we were not going crazy! Both times we got the same answer: mild to moderate autism.
Thank you so much for posting this. It’s so hard when people cause you to doubt yourself when all you want to do is be wrong in the first place. But, alas, denial does not help our children! Action DOES!
Cindy – We went through a lot of that too. I think there was plenty of denial to go around, though. We certainly were in it, and either our therapists were humoring us or no one really suspected autism until right before we had his evaluation. I suspect there was some of both, but I’ve decided not to worry about it. In hindsight, it wouldn’t have changed the therapies we were doing at the time, which were plentiful, let me tell you.
You may have already done this, but just in case (and for anyone else reading this), go to our Links and Resources section, and the first group of links has resources for helping parents get a better sense of whether their child is on the spectrum.
Particularly, check out the M-CHAT test (again, if you haven’t already). The information from the M-CHAT is extremely helpful to take with you to your child’s medical and/or therapy visits. It’s only intended as a way to get an approximate sense of the likelihood your child is on the spectrum, but it certainly isn’t definitive. It’s a widely-recognized tool to help put you on the appropriate path to finding a qualified diagnosis from a professional, and if your doctor doesn’t recognize it, maybe find one who does.
I always say that if you put 10 autistic toddlers in a room together, you’ll have 10 completely different kids. So our post here is a snapshot of where one child was in that one moment in time. Finding similarities helps orient us, though. The J-Man is inching toward 3 1/2 now (!!), and my what a difference a year makes in all this.
We went to a child psychologist who has something like 30 years experience in this and actually does evaluations for the local school system when they have too many cases to handle. It was costly since he wasn’t covered by our insurance, but it was worth it to me because it gave us closure. We knew from talking to various people that when this doctor said he was sure it’s autism, then that would settle the uncertainty for everyone. As you’ve already done, going to a specialist for an evaluation is the way to start settling some doubts and begin looking for where to go from there.
It’s hard to believe that in a few weeks it’ll be one full year since his diagnosis. As I write that, it’s hard to believe – and hard to figure out where the time has gone.
If you live in the US (I used to assume everyone who reads this did, but now I know better!) then IEPs and preschool and county school services are soon in your future. Are you in Early Intervention now? There’s an “Individualized Education Programs (IEPs)” section on that Links and Resources page along with various posts on our site that I hope are in some way helpful. Of course, feel free to ask us questions and we’ll tell you what we know, such as that is.
My son is 2 years and 7 months and I am on a waiting list for 6 months to have him assessed. In BC Canada it costs a lot of money unless you are willing to wait. We are not well off but one thing I do have is time and patience. Our son has most of the things you spoke about. The hand flapping was the big tip off. I really thought he was playing motorcycle for the longest time. I am sad that he might feel different than the other kids and sure wish we could communicate better. The thing about him is he is a chronic laugher..oh, we laugh! He wakes up laughing and goes to sleep laughing. Our days are full of joy and silliness.
I do wish that they didn’t just send me on my way with no projects to work on. I have 6 months and feel I could get some therapy done on my own. Who better to teach him?
Do you have any advice on where I could start? I feel stalled playing the waiting game. I do try to get him to feed himself but it is fling the food time or mush in his hands and then rub through his hair..ugh..Tried to potty train but this is our second potty and he treats it like a toy..not happening yet.
I do love his musical abilities though..any instrument we bring into the home is HIS and he plays well. Guitar, drum and piano and I plan to add some more.
I can’t help but feel sad though and I as well have another on the way. I deliver a girl in May. I feel a bit frustrated though because I feel I should be doing more..any ideas?
So glad I found this site. Any advice from anyone would be greatly appreciated.
Also wondering what you all think of melatonin. We seem to be uping the dose with the same results. 4 am party time for 4 hours every day…we were prescribed clonodine but really don’t want to go there and the other suggestion was seraquil…NEVER!!Couldn’t do that to him.
Thanks again,
Sleepless in Vancouver
@Shannon – I have a bunch of comments and ideas but will need to write this reply in two parts. It’s about time to go pick the J-Man up from school. I’ll also ask someone I know who might be able to give you much better advice.
One thing about the various interventions and therapies usually done at your son’s age is that they are pretty similar regardless of whether he has an official diagnosis or not. When our son was diagnosed, the label changed but the therapies we did stayed pretty much the same. He still had the same sensory needs, need for structure, speech and communication challenges, eating problems, and so forth that he had before the label. So I’d say feel like you have some control of the situation knowing that you can do plenty of appropriate activities without an official diagnosis and still make good progress.
We’re there with you on the baby-on-the-way feelings. Mary is due in May as well. It’ll be a big upheaval in the routine and the process in general, but we’ll do the best we can with all the changes and try to make it as easy on the J-Man as we can. We know it’ll be quite a challenge though.
On the meds – We don’t currently use any meds specifically for autism (what he’s on is for some reflux), but we know plenty of people who do. This is something I don’t know much about except in what people tell me. From what I gather, melatonin is where most parents start since it is the most benign thing I’ve heard of to give kids. I have heard that for a number of children, it only does so much. I remember someone calling it ‘hitting the melatonin wall’. I have no idea what the maximum dosage should be, but it does sound like diminishing returns are a common problem.
I do know someone whose child is on clonidine (he’s a couple years older than your son) and has seen decent results from it. That’s about all I know about it. We share your hesitancy about medications. We’d consider it, but we’d also be very cautious about it. That said, I know parents who are having very good success with medications at dosages appropriate for their child.
I’ll say that for adults, Seroquel can be good stuff. I have no idea what dose they would prescribe for a 2 1/2-year-old, but my experience with it is that at adult dosages, it’s pretty strong. It can definitely knock an adult flat on their butt and get them to sleep well. I just have no idea what side effects it could have on a small child.
This is tricky stuff, so I’d strongly recommend getting a doctor who specializes in autism to administer the medications. I know it’s common for children with autism to respond well to very low doses of a medication (whichever one they find is appropriate for them) that is normally given to ‘regular’ patients even of the same age at a much higher dose. I also read this in a Temple Grandin book recently. I need to go back and find that reference. For example, if kids are normally given 50mg of Drug X, children with autism may experience great benefits at 10mg but adverse reactions at the regular 50mg. It’s an interesting phenomenon.
Gotta run. More soon.
Thank you for that. I eagerly look forward to part 2. One other thing he has just started is covering his ears. I know they would do this with loud noise but we have always been quite quiet with him and if the volume goes up the smallest amount he will cover his ears. Is he becoming that sensitive to noise? I have no idea what is to come but it seems that this is progressing. Again though It seems it is very hard on parents but I have no idea how kids should be and at what level by what age. I think he is great. My husband and I jokingly call him Johnny Tight lips..like I said we try to make everything comical for our little champ..he’s not saying nothing and you can’t break him.
So glad to finally have some people to talk to about all this. Lots of our friends have kids but none with autism. I might look into playgroups when the new baby comes but to be honest at this moment I am very drained.
Thanks again,
Shannon
Hey Shannon – one thing one of the teachers said today was the kids seem to go through phases where some sensory thing is triggered for a while… then it gets better, and possibly another one starts up. The J-man was definitely covering his ears more lately, so we started up again with the listening therapy. Now, he’s covering his ears less, but chewing random non-food items more. So we’re coming up with strategies to deal with that.
Non-autistic people do this too, you know. Those people that jiggle their feet all the time, until someone is aggravated enough to tell them about it… so then they start tapping their pencil on their desk or teeth. Our little guys just have different “stimmy” activities. I was taking some medicine last year, and went through a pack of gum every 2 days because I had to keep moving somehow. When I started having to jiggle my foot too, I asked for a different med, but it took me probably 2 months to figure out the relationship. That’s the part where the lack of verbal communication for our little guy gets really sour – do you NEED something, or is this excess energy, or what?
@Shannon – There’s probably no way I can do everything justice here, and I appreciate the bind you’re in with the baby coming. We have no earthly idea what to make of a new baby in the house in a few weeks either.
I did some looking around and found a couple of Canadian sites that may or may not be of use to you. If they are (or aren’t) let me know. I’ll add them to the links list if they are. Autism Society Canada and Autism Society of British Columbia. One word of advice when looking up resources – if you sense the site is pushing you in one particular direction rather than giving you an objective look at local, state/provincial, and federal/national resources and a broad cross-section of treatment options, there’s probably a decent (or very good) chance they’re selling something. And with autism, there’s a lot of that going around. You have to develop a sense of what is good, quality, helpful information and what isn’t when you research things about autism. And I know how hard this is when you’re starting out. Hang with it and trust your parental senses. I’m sure not saying I know how, but I can usually smell BS coming. I didn’t look at those two sites much, but in what I skimmed I thought they sounded pretty good, but since I have no idea what hoops you have to jump through in Canada for services, I’m not that a good judge of that. Again, let me know if those sites are useful.
I’d grab hold of the situation as best you can and start taking the steps you can take. With a baby coming, that’s obviously going to be a huge challenge. I always tell people, just do the best you can. You’ll have plenty of guilt like we all do, but you can only do the best you can. You all are your son’s best advocates, and for all of us this usually means a lot of rolling up of sleeves, taking some control of the situation, and making it work, government schedules be damned. But don’t feel like you have to do everything today. This is a marathon, not a sprint. And the world won’t fall apart for him if you don’t do something today. Just figure out what the next step is and take that one step, and don’t worry about the other steps just yet.
It is VERY easy to lose track of what a ‘typically developing’ child is supposed to be doing at any given age. While we threw out the yardstick (meter-stick?) a long time ago, there are times when it’s very useful to bring that back temporarily to gauge how far behind or ahead our kids our in various areas. Of course, we think our kids are great like they are. Comparing them to ‘norms’ is primarily – in my opinion – a way to identify areas you might want to concentrate on more heavily. Plus it also helps identify strengths you can build on. If he’s at age-level or better in an area (we didn’t realize three-year-olds couldn’t really read like our son does until we asked around) you can use those as pillars to build other skills around.
Is there any way you could get him in for occupational or speech therapy without a diagnosis? For OT, maybe at least for sensory issues if not something else, though if he’s having significant feeding issues that maybe could qualify as medically more urgent. If he’s over 2 1/2 and not really communicating, I imagine there’s a very good chance he’d be classified here as significantly speech delayed, which at least here qualified our son for services without a diagnosis of autism. Same applied to OT as all of his sensory issues qualified him for services and medical coverage even without the ASD label. I haven’t the foggiest idea how all this works in Canada.
It’s quite possible that he’s very sensitive to noise, but it could very well be only certain kinds of noise. I know this can be an extremely frustrating thing to try to figure out. For instance, there’s a very quiet fan in our house that caused the J-Man to put his hands over his ears the other night and look very unhappy. The odd thing to me was that a much louder noise had just stopped, a noise that didn’t seem to bother him at all. Finding a pattern in what bothers a child and what doesn’t (or what bothers them less) is a tough one.
I know this adds work to the day, but I recommend to everyone that they keep a pad of paper on them and write down what’s going on when their child reacts strongly to something. That really helped us start seeing patterns. One important point – it may not just be the sound. It could a combination of things like (example) the sound plus too much light in the room plus it being too cold plus it having been three hours since he last ate. Sensory problems can be very complex and it’s often a combination of things that bring about strong reactions. Sometimes is the lack of enough sensory input that causes the problems. There are things you can do to address sensory issues, but getting an inventory on what all is going on is going to make evaluations and advice from an occupational therapist a lot easier.
TOTALLY pursue the music route. It’s quite common among the people I know for their kids to respond positively to music. Our son is no exception. Find music styles he likes and play them as much as you can, then see what happens. Give him anything that makes music and see what he likes. If he can play guitar in any form before age 3, that’s pretty amazing. Run with this. If you find that music becomes like his solace, then you have discovered something wonderful. Developing this might also ease the transition with the new baby. It could be something he can really call his own and have as a foundation while he adjusts to all the other changes. Plus, music opens up all sorts of wonderful opportunities.
Just about everybody I know – and me included – will tell you to try working on picture-based communication in concert with working on verbal speech. If you have little or no idea what that is yet, let me know. I’ll try to come up with some sort of primer. There are some posts on here that touch on various aspects of it, though not really a complete intro. A popular post has been Our Version of the Picture Exchange Communication System (PECS) in Action! and you can see a few other posts under Picture Boards. Picture communication has proved both a revelation in terms of improving communication but also as a gateway into verbal speech. It’s one of the foundations of just about everything we do at school.
I’d bail on the potty training for now if it were me. Our son is a year older than yours and we haven’t started potty training yet. We thought about it and we probably could, but with the baby coming, we didn’t see a point and neither did the people we work with. It’s almost a certainty that he’d regress and lose any progress we made there when the baby comes. So we’re just going to wait until life settles back down. I really need to get one of our son’s teachers on here to describe how they potty train, especially in how they potty train non-verbal children. They don’t do it completely for us, of course, but it has to be a team effort since they have him 6 1/2 hours every weekday.
The most important things to keep in mind are that you are not alone in this, and that whatever you’re experiencing or facing or going through, someone else has walked that path and knows the way through it. There will always be people out there to help and who know how to do things.
Your comments have made it clear to me that what the Internet sorely lacks are resources to help parents do some specific activities at home in concert with medical or government services, as a substitute for them (imperfect, but at least something) when they aren’t yet available, or even as a stopgap measure until you’re able to afford them. I feel a vision forming!
I might know someone I could hook you up with to give you some more practical suggestions on what to try at home. If you’d be OK with that, send me your e-mail address and I’ll see what I can do. I’m also interested in talking to you more about this because creating resources for parents, particularly in situations like yours, is something I really want to do more about, and I’m looking for people to bounce ideas around with. With both of us having new kids in the house soon, this isn’t the easiest time to start a lot of new things, but maybe we can still exchange information and see what good ideas we can come up with. You can e-mail me at tim —at— both hands and a flashlight [dot] com (formatted correctly, of course!).
My brain is failing for the evening, but I’ll let you know if I think of more things. Feel free to ask me anything you want, and I’ll try to respond with something helpful!
I, my twins, and my nephew flap when excited and happy. It makes processing information more enjoyable.
Ms. Grapes – There’s a t-shirt I saw that says “I’m flappy when I’m happy.” It wears me out, but it’s great exercise!
No wonder my kid is so strong!