our journey through the gray--long | Autism PDD
Hi everyone: I started this post because I've wanted to "talk" with others about my ds and have been coming here for about a year and have posted a handful of times when in an extreme situations (starting OT, a dentist visit gone bad, sensory issues, etc). Some of you have been quite helpful to me in the past so I thought I would re-introduce us and give my story thru the gray area.
My ds is 3 1/2 and has a SPD diagnosis at 2yo. He recieved this diagnosis thru a pediatric OT who specializes in sensory processing disorder at a well-known hospital. He has received EI services for it, but we moved to another state five months ago and I have not implemented his IEP because at the moment, he appears to be doing well. His sensory issues were evident since he was an infant, I just was unaware and uneducated about what was going on with him and thought him to be just quirky and picky. However, his sensory issues got in the way of everyday activities which is what caused me to seek help for him. He is a sensory avoider. He has made great progress over the last year and now he can wear shorts and short sleeve shirts this summer.
What makes me wait on seeking a medical dx (if he even is PDD/ASD) is that he does have social abilities and can make eye contact (although I don't think he can maintain it. I can get him to continue to look at me if I prompt him--but do all three year old maintain consistent eye contact with strangers?). Social situations have to be on his terms, though. He can carry conversation, but sometimes it doesn't make sense, and that is difficult right now to distinguish if it is age related (he's 3 1/2), maturity or communication problems. He can obey instructions given and is sweet. He usually understands when others are speaking to him, he just won't respond unless he's ready or willing. He is well-mannered and good natured, so when he has "problems" with communicating with others and sensory issues, I know he's really struggling because he's not the type of child to purposefully make things difficult. He is smart and has never appeared to be aloof or unaware of my presence or voice (these times are few and far between--except at the dinner table, he tends to zone at the table but is easily distracted).
Here are things that I question and watch, that make me think he is somewhere on the ASD spectrum. I tried to only add things that I would separate, as much as possible, from his sensory stuff; because that could really go on and on. He's had so many ups and downs with that from loosely clasped fists at 15 mo. old to eating issues to fits to clothes issue to noises, etc. Most of what this list consists of is stuff that I would say is in addition to his hypersensitivity:
- he is extremely literal and has been since he was able to talk (about 11 mo. old). For instance, I once said to him "T, I'm going to make you some toast" and he said "I not toast, I'm T" His first word was "mama mama" but, then it was things like "fan"--as he watched the fan while sitting in his table top swing perfectly content just watching that fan. He would just look at it and say it "fan" "fan" "fan". Next was pie. He called anything he ate "pie" and did associate it with mealtime. He would just say it over and over "pie" "pie" or "fan" "fan".
- He's factual--he won't say things like "I'm hungry" he says "my tummy is growling". He cannot tell me if something hurts him. If he injures himself he will become upset but cannot communicate what went on. We continue to work on this, but it is like a puzzle, and at times doesn't make sense.
- He has an amazing memory; he's been scripting movie lines and/or books since he was 15 months old, delayed and immediate;
- he is not potty trained and has no desire to sit his naked tushy on that seat; its almost like he's afraid to sit on the potty. I do believe he knows when he's going, he just won't take that diaper off
- he cannot tolerate crowded rooms or echoing inside places, church, mall, restaurant, etc; will not enter public restrooms because of noises and new things;
- has had temper tantrums that are way beyond anything my other children ever had--although I must say that they are getting better--I feel like sometimes I can "catch" him before he totally loses it, but when he's melting down, generally there's no way out of it until he's worked thru it. I cannot touch him if he is over-stimulated--I must wait until he's ready for my interaction and he doesn't want me to leave him alone while he's fitting.
- he's just now able to handle a hair-cut with lots of bribery.
- Forget about dentists and doctors visits--at least dentists seem to be getting worse as he gets older, he hates when others touch him uninvited.
- he does have repetitive behaviors, but I must admit, I can redirect it and it comes and goes. He could sit and watch the washer and dryers at the big laundry mat--he likes them--yet, I can redirect him and get him away from it. He's gone thru times of watching flushing water in our house, enjoy watching filters in pools and drains on sidewalks and water being poured on sand in the same place over and over. These things come and go which is hard for me to understand. He likes to do the same things over and over, but I can distract and get him involved in other play/activities.
- He does like play to be on his terms; he will tell others what to say and do while he plays and generally holds onto a certain item/toy that no one else can touch, most of the time its a set of keys or a purse or bag or stuffed animal. His interaction with others is fairly good, I think. He does play with others his age, but it is also not uncommon for him to remain in his activity when other little ones have moved onto the next activity. He is not uncomfortable playing alone and looking at books alone, although I don't think its out of the ordinary for his age and development.
- He has an extreme dislike for any kind of waded up string or thread. He doesn't like it--he says "its disgusting".
- He has been using words like "actually" and "specifically" for about a year now, not always correctly (in the right context) but uses them often. He does get pronouns confused and doesn't say he and she for the appropriate male/female, but I think it could be maturity and developmental right now.
- He will line things up from blocks to food to dominoes, cars, toys, etc. But again, its not consistent. He goes thru periods of it, just like his flapping, toe walking, ear flicking and weird hand movements--they never stay, they come and go. The only one that has remained is his lip rubbing. He has done it since before he was one--he rests his fingers on his cheek and rubs his lips with his thumb, mostly the left hand.
- He has major food issues and dislikes. This is another area of inconsistency. He will go days without really eating a meal. I've taken him off of milk and am trying soy right now, but I think that might be doing the same thing as the milk. I saw great behavioral improvements when I switched from regular milk to lactose free, but it seems as if now that even the lactose free bothers him, as well as the soy. I need to make some dietary changes for his benefit. He's been this way since he was an infant. I solely breastfed him and noticed a lactose issue and I cut it out of my diet as I breastfed. He's held food in his mouth, spit it out in my hand, won't touch certain things at all. Eating has been one of the harder things to deal with. He seems to have fine diapers. On the milk, I would say more loose poops. I think he has a stomach ache a lot of times, but doesn't know how to say that.
I haven't taken him for any evaluations yet. They were scheduled where I lived previously and I haven't adjusted here yet and haven't sought out where we should go. And, of course, insurance, money, time and distance all play a factor in seeking out a good professional. We are homeschoolers. I would like to keep it this way but am not against any helps that my son would need.
I want to gain as much information as I can about what could possibly be going on with my child, even chalking it up to maturity, waiting, time, development and even personality if that's what is going on. Outside of sensory and food issues, he does fairly well. Most people who meet my son say hes just like any other little boy. I think that is good but it doesn't minimize what I am seeing and dealing with. I recently had a friend over who has a child with PDD-NOS and her child is almost completely non-verbal and they work very hard to get any verbal words and she told me "oh, just stop complaining, your child is fine--look at the difference between mine and yours" and I do see the differences--however, it still doesn't minimize my son's behavioral and communication difficulties. Maybe I won't get answers for a while and I can accept that as long as he continues to progress and mature as appropriate. I think the next two years will tell me. If I was to guess, I would say asperger's syndrome.
So I guess I wanted to re-introduce myself, say that I like coming here for advice and support and long to find a community here, even if I don't have an actual diagnosis. I see so many similarities with my child to others here. However, I know if he is ASD, he is high-functioning or mildly affected and don't want to hurt/discourage/upset anyone who has a child that is more severely affected. I respect you all for coming here and sharing a part of your lives with others--no matter how this ASD has affected you, if we are here, hasn't it affected all of us? That's what I keep asking myself after a year of reading, gleaning, watching and trying to gain more knowledge about this. Thanks for having me. I may be a guest and not ever end up with a dx, but I sure see some of the same things going on. Thanks for taking the time to read my ds story. I appreciate all comments--but am a little fearful of rejection....................
Welcome back!! No rejection here--so many of us came here well before
dx. There are several folks on here who are awaiting dx or don't have
one at all. And, just like the PDD spectrum itself, this group is made up
of that entire spectrum. So, no worries!!!
Have you thought about aspergers? Some of the issues are in that grey
area, but there are some signs there. I would probably see a professional
to do the evaluation. That way, if it is PDD, you can get some services
going. Check out this link:
Asperger Syndrome
Welcome again. Glad you are here!
so much of what you said about your little one sounded like my ds , he wasnt dx til he was 6 .we all new something wasnt right but we didnt have any asd experince. the thing that i really regreat is not going earlier to the ped,he missed all the early intervention, was totally unprepared for school and I was totally unprepared or pro active for him at home. once we had a dx we at least had an idea of where to go.i felt relived and petrfied at once.i didnt want it to be true i wanted it to be just sensory issues (he was dx with sensory processing delays well before dx hfa) there are some days when he just looks like all the other kids in the play ground but the truth is it is extremely hard,tiring and stressful for him to do it.
i hope you dont mind me sharing with you .i really do wish you luck it is such adeeply personal time it is challenging mentaly ,physically, finacially,spirtually. its the time when you learn the differnce between bending and braking. good luck what ever you decied to do it wil be right for you and your family .
Hi! welcome back
My son (4.5) does many of the same things you mentioned. Especially
your descriptions of his literal language, His use of "actually" and
"specifically".
Once I was in a long line with him and said, "this is going to take all day!"
He looked extremely concerned and said,"not ALL day?!!"
We were at the library when they made an announcement that it was
closing. He screamed. Thought we were locked in!.
Anyway, I know that "gray area" pretty well. His dx is "mild autism" but as
he gets older, they are now "leaning" toward asperger's. It took us about
a year to get a proper dx, because at 2.5 he was still developing within
late-normal range in many areas. By 3.5, his delays were more clear.
Especially social and gross motor skills. His sensitivity to sound was at an
all time-high by then as well. He has always been able to engage with
familiar adults 1:1, but not other kids. He generally avoids them. Unless
they have candy....
There are so many fantastic parents here on this board! Kids all over the
spectrum. I welcome you back and look forward to your posts. Many of the things you describe sound like they could be sensory related and not ASD - the fan might be, the avoidance of crowds, not tolerating a haircut, not wanting his face to be touched, rubbing his lip persistently, his food pickiness, disgust for seeing balled up strings. But it sounds as though his sensory issues are strong. I was told my son's sensory problems were strong, so strong that even after intense therapy at home and with an OT (saw OT weekly but we did everything we could at home daily), he STILL was a strong sensory craver. I don't think these go away permanently in a few months time. I feel they may take years for some children. I read that sensory issues that are very strong can sometimes LOOK like ASD.
I don't know that lining things up is sensory related - that's the only thing you mentioned that sounds like ASD. I read it's a child's way of keeping things in order, keeping his world in order because everything appears to be in disarray. However, kids with SPD may feel out of sorts and wouldn't they also have a strong desire to control their environment too?
I also read that rigidity is more an ASD quality.
I never got any concrete dx for my son's behavior. Sometimes I feel like my son may be the hardest case in the world.
But I painfully assumed he may be ASD and put him in speech therapy, tons of OT, floortime for hours daily. To combat his rigidity, I kept introducing him to new situations (slowly of course) and people and helped him to adapt to our dynamic world. If I were in your situation, I would increase the OT and do it daily if possible (without overstimulating him). I would keep challenging him in your play with him repeatedly (but slowly again). Insist that you be able to take turns with him in a game. Initially you can negotiate, "Okay you can have your way this time IF you promise I get to do it my way next time. " Then hold him to it and remind him of what he promised you. Then do this in play with him over and over again daily. We bought my son this book called, "Bossy Bear" as a social story of what happened to a bear who was too bossy with everybody. He was affected by it, recognized some of his own traits.
For the fan obsession, I'll share with you what I do for my son (he is obsessed with fans too). I let my son make fans with his tinker toys or legos or with arts/crafts. BUT - I always make him use it as a prop in a pretend play. Our pretend play could be mommie as the dragon who is trying to steal his beloved fan toy. He's the good guy who can turn himself into a wizard and with a magic wand turn me into a toad. Suddenly, the spell wears off and the dragon pursues him. He jumps off into his spaceship and escapes. He returns to find dragon sobbing. Dragon never had a fan toy before but didn't know how to ask to share. So my son explains to dragon he must ask to share first and then shares his fan toy. I know these scenarios sound so wacky but they appeal to him, get him so excited that make him almost forget he's holding a fan toy. Suddenly the fan toy isn't so important as the pretend play. But we do these type of pretend play scenarios daily many times. And each one has to be different otherwise I'll be creating a repetitious scenario for him. Since he craves repetition, I avoid it. My hope is after some time, he'll cease his obsessions and prefer these other games.
I would find the best autism clinic or the doctor most experienced in dx ASD and see him immediately.
Read that book, "The Child With Special Needs" by Dr. Greenspan! It's full of good advice.
I agree with sunflowers that many of the concerns listed could have a sensory origin, and I'll give you some helpful links at the bottom of this post.
Your concerns aren't going away, so for your own peace of mind, you should get him evaluated as soon as possible. This will help you get services for him for any delays they might find. The school district is responsible for services, and I hope you have a better experience with the school district in your new town. One alternative might be to supplement homeschooling with a few special ed preschool hours a week, as you see fit. (I'm not that familiar with the American system since I'm in Europe).
It's great that your son shows so many positives, also in the area of social and communication. My son did, too, but I made the mistake of delaying evaluation and focusing on his strengths to the point of not communicating my concerns clearly when he was a preschooler. He wasn't diagnosed until age 7.
If you decide to get your son evaluated, it will help to make observations and anticipate the kinds of questions they will ask. The childbrain questionnaire can help you with this. Here's the link:
http://www.childbrain.com/pddq6.shtml
Finally, below are some other links (ignore the yellow highlighting), that may be helpful to you, in case you're interested. Good luck with everything. I hope you stick around -- diagnosis or not -- as long as you find this online community helpful.
http://www.tsbvi.edu/Outreach/seehear/archive/mannerism.html #Chart - about the sensory nature of stims. This might help you figure out the basis of the fascination with fans, water play, etc.
http://www.sensory-processing-disorder.com/The_SPD_Companion -SPD-and-potty-training.html - The Sensory Processing Disorder Companion newsletter issue devoted to potty training.
http://www.autism-pdd.net/forum/forum_posts.asp?TID=16098&am p;KW=potty+resources - more helpful potty training resources
http://www.sensory-processing-disorder.com/The_SPD_Companion -picky-eaters-and-resistant-eaters.html - Sensory Professing Disorder Companion, a newsletter issue devoted to picky eating, with info based on the highly-recommended book "Just Take A Bite."
http://www.sensory-processing-disorder.com/picky-eaters.html - more from the people behind the above-mentioned SPD Companion.
http://www.autism-pdd.net/forum/forum_posts.asp?TID=18317&am p;KW=pickiness - more resources related to pickiness and eating difficulties.
mummyb: Something you said that really strikes me, that there are days when your son does look like the other kids on the playground, but it is extremely hard, tiring and stressful for him to do it. This is what it is like for my son. It seems that the older he gets, he's more able to "stretch" in some areas and unable to in others. He's getting better at not tantruming so much, yet, he cannot and will not tolerate someone touching his face, especially a doctor or any doctor's office for that matter, dentists to be specific.
Thank you for posting to my story and encouraging me.
MamaKat: My son is full of these literal term, just full of them. They do make light of most situations when we need a smile.
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