Hi! I'm new here. I'm so glad to have found a place to ask this question because I've been getting blank stares from people I've asked who I thought should have answers.

My son was diagnosed with SPD about a year ago. He's 7. I wasn't really happy with the way the evaluator (dev ped, not a p.neuro,which I wanted) ran the evaluation. She barely glanced at my son. I'm looking for someone else to give a second opinion, but in the meantime:

My son does have sensory processing disorder and it's obvious. But it's only obvious at home. And not in front of strangers, but in front of people he knows well enough not to be shy in front of.

But that isn't his only problem. He is also about 2 years behind on an emotional level, and he doesn't really get being social. His friends are the kids in his class who are also below level when it comes to maturity. He doesn't really know what to do when a stranger asks him a question, he doesn't respond properly even when his friend talks to him. He's a great kid but he can't use "hi," "bye," "please," and "thank you" properly. He knows he has to because we tell him to, but he doesn't understand why he should. Of course we've told him countless times, but I don't think he really understands. He doesn't use these words without being prompted.
He doesn't play properly with his siblings or friends either. His idea of finding something to do is to go up to his siblings individually who are all playing nicely and take their toy away. If I asked him if what he's doing is the right way to play, he'll say "no" and jump up and down with frustration and boredom. He can't find his own toy unless I help him. He sounds 2 years old but he's seven. In school he wouldn't dream of taking a toy away from a classmate because he knows it's wrong, doesn't want to be punished, and is kind of intimidated by his classmates.

Sorry this is so long, my main point is that he has big social/emotional problems. So when I went for an evaluation, I was thinking he'd be diagnosed as being on the spectrum, but the evaluator was adamant that one can have SPD and big social issues and not be on the spectrum. Yet, almost everybody I've talked with tells me that their children were diagnosed as ASD for these same things. Not that I want my child to be on the spectrum, but I need accuracy so I can get him help.

My son is very high-functioning and no doubt seems normal to many people who don't really know him. He has some of the "autistic elements" like a weirdly strong memory, being very visual, a very strong fear factor, loves maps especially of highways and transit systems, he has almost no imagination at all also.

He has the kind of memory where he can remember almost everything (except when I tell him something, LOL), like what day certain things happened- randomly he'll tell me that he went for an eye appointment on a Wednesday 3 years ago, or my birthday was on a Friday 4 years ago. He gets straight A's in school for now because he simply memorizes what the teacher says and spits back the information. He doesn't understand any of it though. His comprehension is pretty weak, sadly.

I don't think he really relates to people or things. He's never ever played any imagination game since he was born. When he draws a picture it's of highways and cars driving. (He loves cars and roads.) When he plays with blocks, he builds a parking lot every single time. He doesn't drive the little cars around, he just sets them up and they sit there until clean up time. He did start building from blocks a stage for his favorite singer's show and a section for an audience. Again, it all just sits there, he doesn't actually play or move the blocks around to perform different things, or whatever.

So what I'm asking to fellow SPD'ers or parents, is does this sound like typical SPD personality, or am I right to think that this is more ASD behavior?

My son also has a lot of anxiety, including selective mutism.

Thanks in advance for any insight!

I know a little of how you are feeling. My 5 yr old son was just diagnosed with SPD this month. This comes after getting a re-eval for ASD, which he is not on the spectrum. He was diagnosed at 2 yrs with PDD-NOS.
I have looked at some research that shows many of the symptoms of SPD that can mimic some of the tendencies of ASD. I still see many tendencies of ASD every day in my child, but some of them can explained by SPD.
My son is also at least a year behind emotional/maturity, so we had him retained in Kindergarten so that he can work on some of the social skills that he needs to succeed in school.
I know it's not the same circumstances, but I would recommend getting that second eval that that you wanted. My sons SPD diagnosis and not ASD came only after 3 different specialist. Never give up until the pieces fit for your child.
GOOD LUCK!

I think there can be a very thin line sometimes between different diagnoses. That's why there are so many misdiagnoses of kids. So many ADHD kids who are SPD, etc.

My son's kindergarten teacher was the one who expressed concern because he was still parallel playing and not interacting with the other kids. He was evaluated that summer for autism but he didn't fit enough of the criteria to be on the spectrum. So he shows some tendencies toward autism but he's not all the way there. Once I read the SPD checklist, it just clicked. That fit him.

He was also very behind with his maturity. His hardest years were 5-6-7, and even up to 8. It wasn't until between his 8th and 9th birthdays that his maturity level seemed to catch up to his classmates (at least smaller gap). Then his meltdowns were less frequent and we were starting to see the boy inside. And he made even more progress from the beginning of 3rd grade to the end of 4th grade this year. His teacher said he finally blossomed!

As for playing, the school social worker modeled behavior for him in Kindy, 1st, and 2nd. Showed him how to play with other kids, how to ask to play with another child, etc. Now that he's older, I've found that his weekly social skills group to be the most helpful. How to be a friend, how to behave in certain situations, etc.

My son has a very difficult time with transitions and the unknown. He needs structure and to know what is planned for the day. If there are changes, then there are anxiety attacks and meltdowns.

The memory part does sound like ASD, but it's possible the other elements aren't enough or strong enough to warrant a ASD diagnosis. But go with your gut. It's good that you're getting a second opinion! Let us know how it goes!

Thank you for making me feel I'm not nuts! I really appreciate it. I thought it was just me who keeps wavering between diagnoses. You gave me hope for the future.

As a 2 yr old my son would have probably been diagnosed as on the spectrum. He had a lot of ASD behaviors, like he never pointed anything of interest out to me, he walked on his tiptoes, lined up toys, etc. The OT evaluator insisted that these were SPD behaviors from being overwhelmed with his surroundings. When I asked her if she thought there might be a chance that he is really on the spectrum, she looked shocked that I'd consider that- like I said he is very high-functioning and you can't tell from meeting him once or twice- but she told me what you said, go with your gut and don't stop searching until you're satisfied.

The weird thing is- and I meant to write this in my first post also but it was getting too long- when he was a toddler, his SPD behaviors were almost polar opposites of the SPD behaviors he has now. Then, when he hit his knee and was gushing blood, he kept on playing and didn't even notice. Now, at the slightest risk of getting hurt, he screams like he's dying. There are a few more things he does that were the opposite extreme when he was younger. He never used to like getting his hands or clothing dirty, now it's the opposite. Etc etc.

So I ran this all by his OT when she first gave me a questionnaire to fill out and she said she's never heard of that before- SPD behaviors changing to the opposite extreme. So I wanted to ask if any other parents have heard of or had experience with this kind of thing. Either the OT I have isn't that experienced and I need to find a better one, or my son really is just a mystery. The OT also never heard of someone being SPD in their home but the perfect angel in school and in front of others. I understand it perfectly- my son has a very strong fear element (also typical of ASD) and his fear controls him while he's out of the house. Once he comes home, the fear leaves him, and he's completely compulsive and hyper.

I know I should count my blessings: 1) My son does well in a mainstream classroom. 2) He has friends. 3) He is very high-functioning- I even send him to the grocery store when I'm out of something and I'm in the middle of cooking (yes, he can even count change). I just want to help him further so that he can overcome his difficulties, which can ruin his life as an adult if he doesn't learn what he needs to.

On the learning comprehesion, for memorizers, it is best for him to partner with a child who has an imagination and can conceptualize but can't memorize well or at all. I was the imaginative child with zero memorization ability. I made a point of partnering with the memorizers and the kids that just KNEW the answer, but couldn't explain it. I would force them to explain it to by filling in the in-between steps that I was aware of. In the end, they helped me get the answer and I helped them understand where they got the answer from.

This took longer, but it helped all of us retain the information well past the exam. It helped me retain the information for decades, once I learned something this way.

On the stealing toys from siblings, that can be just an attention stealing attempt by him. Are his siblings younger or older? If it is a sensory problem like visually blind to his own toys that are just sitting somewhere in plain sight, but to him they are invisible, then I recommend having a few of his toys that you have him specifically touch and when he is done with them put them away himself so that he has touch memory of where the toy is.

I have problems with visual "blindness" and have to touch things if I ever want to know what happened to them. Otherwise, they cease to exist. I moved a few years ago. My husband did most of the packing. Some of the boxes went into the basement without me ever touching them. Everything in those boxes disappeared from my memory or were filed away as "lost". My husband can say it is in the basement all he wants, I will NEVER find it unless I open every box in there.

My house is a giant library, but I can't read the titles of all the books unless I spend extra time to concentrate on it. I have to have special spots where my next reading material is located or it will never be read. I just "can't" pull something off a section that wasn't a designated spot and start reading it.

I am not on the autism spectrum at all.

I have an ion channel disorder. When I am in an attack, I switch from Hypersensitive to Hyposensitive. I can switch completely back and forth in less than an hour. When I am Hyposensitive, I have to be extra careful that I don't injure myself. When I am Hypersensitive everything irritates me. The Hypersensitive mode sometimes triggers my Hypokalemic Periodic Paralysis when the pain load gets too high and that is when I switch to Hyposensitive.

Yes, SPDers can go from one extreme to the other. Sometimes it can be situational. Be hyper in one set of circumstances and hypo in another set of circumstances. That's what is so tricky about it.

This isn't the best example but i can't think at the moment: my older son can't stand to have his hands dirty. He fidgets and rubs them until he's able to wash them. But he is completely oblivious to any food or dirt on his face.

My younger son does very well at school, but as soon as he gets off the bus, he let's it all go. That's why I've been torn for a year now about having him evaluated and diagnosed. He has friends, he sits quietly, raises his hand, does well academically, but at home, he is a sensory seeker. It's because of his food issues that I finally made the call to have him evaluated (appt on the 13th--his 7th birthday). So yes, your son is probably doing everything he can to handle his day at school, then he feels safe at home to let it out.

How frustrating this must be for you! I have a very young son who has SPD (under 1 year old) that we caught because of a regression. He is in therapy for feeding and OT right now and we are unsure if it is an ASD or not. We are doing the GFCF diet which has helped him with eye contact tremendously. He is so young that we cannot get a diagnosis of WHAT exactly it is at this stage. It would help to get a diagnosis so that services would be covered.

My son, I can tell already, is VERY bright, but very socially inept. He tried to figure everything out -- how things fit together, opening and closing things, he can even plug things into outlets at 10 years old because he has seen it plugged in there before... he is amazing, but has such issues with SPD. He is so sensitive to light, sound, cannot self soothe, etc. It is so sad. He does not like to be held close or cuddled at all and is a major seeker at home.

When he is in public places (though again he is very young), he does not babble or make noises -- he clutches to us... but get him home or in the car with MOm and Dad and he is mamamamama, um, dadada, and making all kinds of sounds. He is very fearful of the unknown as well and we will see what happens on his journey.

We are taking our son to a DAN! doctor who works with all kinds of children on and off the spectrum with neurological problems. He has been our biggest saving grace thus far. He too has a child with SPD and Autism and speaks the same language as us... instead of looking at us with a big blank stare like our other pediatrician did... saying that he was FINE. Ughhh. This doctor told us that if you were to take your son/daughter to 10 diff developmental doctors, you would probably come out with 11 or 12 diagnoses... ultimately, you need to trust your gut, share you story with them and find the one that fitsbest. And don't give up till you do so that you can get the help you need and deserve.

Good luck to yoU!!! All the best!

Thanks for all the encouragement.
Sorry I haven't replied. Since I posted last, I noticed that my son was having a regression and I was so busy worrying and keeping tabs on him. It happened in the weeks between camp and school.

Now my son is back in school, his therapies have started up again and I'm hoping for the best. I am sad that we had come so far and now we have to work back up to where we were. I'm trying not to be depressed about it. Sometimes, when he's doing really well, he seems to be only SPD, sometimes he seems like Aspergers, and now I'm scared of he'll be going deeper in on the spectrum.

I used to allow him to cross a few one-way streets, I had to tell him he isn't allowed to anymore. He used to go buy a few things for me at the local grocery like a bottle of milk or a carton of eggs. I don't trust him anymore to do that. I'm just really sad that my "big boy" (he's my oldest) needs to learn to be big again.

His therapists told me not to worry, that I should give him a few weeks into the school year to get back to himself. But the what if never leaves me. Regression is so nerve-wracking. You don't know where it's going to end and why it's happening.

The good thing is that he is happy in school and he is relaxed with his friends. His comprehension for stories has gotten better and he knows the material that his teacher gives over to the class.

This past weekend with no school was a nightmare for us. It was a taste of what we had before school started and we realized that it's the lack of structure that makes him wild. Our days at home are more structured than most families but that isn't enough for him. He needs to be out of the house to snap into his calm mood and he needs to be in a program ran by someone other than his parents to be his utmost best. I don't know how to work this out. Most of his friends are busy over the weekend doing family stuff.

The other thing is that I decided to put him on an elimination diet. I'll have to send lunch with him to school and I'm not sure what I can send. I'm testing for gluten, casein, corn, soy, and eggs.

If you read this far, thank you.

Yes, I find summers and school breaks to be the hardest since we don't have the same sort of structure that school offers. I try my best to provide structure for his day, but things come up and we have to change plans. That's when the meltdowns happen. The summer between Kindy and 1st was horrible since we were still trying to figure out what was going on with him. He turned 10 in May and I think this summer was much better than previous summers. Now when we get up in the morning, he'll ask me, "What do we have planned for today?" I tell him and I try my best to stick to it. If there's something that might change, I emphasize it over and over that X *might* happen or if we can't do that, then we'll do Y. He seems to be better about it. When he was in 1st and 2nd grade, we made a poster with words and pictures of his morning and bedtime routines and hung it in his room. I think that was good for him to have something to refer to when he lost focus or forgot what he was supposed to be doing. Maybe his therapist would have ideas to help for weekend structure.

My older son had some regression too. It felt like we'd go two steps forward, one step back. And some weeks it felt like one step forward, two steps back!

Academically, he really made a lot of progress in 3rd and 4th grades. By the end of 4th grade (this past June), he was pretty much on level with his peers, right where he should be. He also made huge progress socially in 4th grade and started to find friends.