SPD Support Forum

Hi, reading through this forum is really so helpful. I am mother of a 4 and a half year old boy diagnosed with autistic spectrum condition (6 mts ago). He is very high functioning, intelligent, started mainstream school in England in September, though he needs a one to one assistant at all times. Soren has lots of sensory processing problems which I am hoping an OT will be able to help with (appointment pending). I was wondering what comments you may be able to add.

Soren jumps up and down incessantly. He did not do this when he was younger, I have looked through lots of video footage and he walked very calmly/normally up until the age of around 4. The only physical quirk he displayed was opening and closing his fists when he was excited. This has now developed into something much more intense - jumping up and down pretty much all the time, and when he walks down the road he is also jumping. When he jumps he is also regularly flapping his arms (I know all of this behaviour is typical of autistic kids). What I would like to know more is why did he not display these more intense behaviours before the age of 4? It has just puzzled me recently whilst looking through old footage of him. He appeared so normal with very little sensory issues.

Soren is overloaded by visual stimuli. He finds it hard to focus at school because of everything in his environment. He can see things that a 'normal' person would not even notice. This I believe makes him now continuously jump up and down and hum a monotone humming noise, because he is so overloaded. Sometimes he is doing this because he is anxious (noisy room at school), but he also does this when he is happy (walking to park etc).

He is very affected by noise. He can get upset by loud noises (such as lots of children singing), however this does not seem to have a pattern and sometimes it doesn't bother him. Soren definitely finds peace and tranquility when wearing headphones (listening to audio cds, dvds, playing computer games). Soren when upset by noise can shout out really loud, as if trying to make a louder noise than the one he can hear.

Soren couldn't ride a tricycle or scooter, whereas his peers seemed to pick this skill up from an early age. It wasn't until I learned of his autism that I realised why this was, because his gross motor skills were compromised. Soren doesn't want to climb monkey frames in the park and is very tentative when climbing, but he loves the roundabout, swing and slide. We are attempting to teach him how to ride a bike (only just started, using a bike designed with no pedals) and he is very cautious with it. Does anyone have any ideas about bike riding if you have vestibular and proprioceptive dysfunction?

Soren was always a very aggressive child, very difficult playing with other children, hurting them and so forth. I have made huge leaps with him since learning of his diagnosis 6 months ago, and putting him on GFCF diet, cutting out as many processed foods, additives and so forth as possible. He is on daily probiotics, digestive enzymes and vitamin and mineral supplements, including fish oil. The change in him as been significant. Soren has always had loose bowels up until this new regime. He wants to play with other children, so is not a true 'autistic' in that they don't want to be with other children. Soren does, but he just does not know how (though he can play with a small group of children, no more than 2 or 3). He gets very overloaded by his environment at school so he cannot play in the main school playground with all the other children, as he starts becoming aggressive. Having a one-to-one is a necessity for him in a classroom environment to help him focus. The paediatricians have said they do not believe him to have ADHD as well as autism (which I know is common).

I know this is not an autism forum, and so I don't want to go too much into it, but his sensory processing issues are so interlinked with his autistic traits. I have recently read that an OT will be able to help a small child under the age of 7 dramatically because their nervous system is still so malleable. Will Soren be able to stop jumping up and down and flapping his arms at all times? I know he will still have a need to do this, and its important that he can be allowed to do this, but I just worry so much that he will be picked on....

I know that we need a trampoline for him in the house. At the moment I take the sofa cushions off so he can jump on the sofa springs or cushions, but it does not seem to provide enough 'oompf' for him. I take Soren to a cranial osteopath which has helped massively for his emotional behaviour (made him much more easy to negotiate with, he is far less defiant), but not for his physical sensory behaviours. Has anyone had any benefit from using a weighted belt, or one of those really tight vests which help to provide sensory input? I am sure I will learn more about what to do once our OT appointment is made, but this is on the NHS so prob bit of waiting list. Finally he goes through episodes where he tenses up all his muscles whilst holding out his arms, as if creating controlled spasms, which he seems to enjoy doing. He tends to do this a lot whilst sitting at the table having dinner, and he smiles whilst he does it, so its not an unpleasant thing for him.

This is such a huge post, thank you for your patience reading this and if you have any comments at all, I look forward to hearing what you have to say. Thank you x

Hi... welcome to you and Soren!
Do you think the self stimulation of jumping etc (stimming) is related to starting school? We were aware of sensory issues with my son before he started school but I only ever saw him stimming once he'd started school and got over-excited and hyped in a way that didn't seem to happen in his preschool (a lovely gentle place). His teacher in his second year of school (dreadful woman, very unprofessional on many levels... don't get me started!) announced he had to "be autistic" on the basis of his stimming. Children get really hyped by other children and the school environment with its busy-ness and noise can just overload children - and no it's not predictable or consistent, some days the "coping cup" takes longer to empty. There are some people who think that the sensory stuff is at the basis of a great deal of what is "autistic" behaviour.
Sometimes it can be helpful to approach it from a behavioural analysis direction - try and see what might be a precursor or trigger. Start a daily journal: How did he sleep? How did breakfasting go? The preparation for school and trip there? You'll need to get the teacher on board and hope they are intelligent observers (our teacher wasn't....) - can he/she see a link between the days he copes with the singing and the days he doesn't and what came before?
OT can be really helpful providing really strong physical stimulation that impacts deeply on the big joints (hips, knees, shoulders) in particular that is wonderfully organising and calming. Carol Stock Kranowitz's book "The out-of-sync child" explained it all so well - really worth reading about sensory issues. Trampolines are great! Music with a big beat can sometimes work well when they're bouncing, a good solid, regular rhythm.
Anyway - some ideas from me! Let us know how your OT appointment goes and keep asking questions.

BusyMum
Sydeny, Australia

Hello

your child sounds alot like me when i was younger, and sometimes still today. i dont jump up and down anymore but when waiting for the bus or something i cant stay still and i always have earphones on. I have and asd and spd too.
I was just wondering if you know what type autistic spectrum disorder he has? Just so maybe i can understand a bit more and try see if i can help.

Hi BusyMum and littlelion. Thank you for your kind replies and suggestions. I have ordered The Out of Sync Child, I'm still waiting for it in the post from Amazon, I can't wait to read it.

The paediatrician just said that Soren has autistic spectrum condition and that they don't grade it in any way (well, in the UK anyway) but she said he is very high functioning. His teachers at school (he started school in Sept) said that his reading, spelling, numeracy is advanced for his age group, so he is bright. I asked the paediatrician if Soren had SPD and she said that they don't label him with that as a separate disorder, and that it is just all part and package of his autism. I don't have any autistic traits but I do also suffer from sensitivity to noise, and I have strange feeling in my wrists and ankles often, in that I have to rotate them a lot in order for me to feel them properly. I just used to think it was a wierd thing that I did since a child, but now I realise that this is probably a mild sensory issue.

Soren's jumping up and down and humming started before he started school, so around his 4th birthday in March. I was just wondering whether as the body/mind of a child matures they start to react to their bodies more, and hence the stimming now, whilst the stimming was very slight when he was younger (opening and closing fist when excited). Littlelion did you have OT for your asd and spd? Thank you again.

"I have strange feeling in my wrists and ankles often, in that I have to rotate them a lot in order for me to feel them properly."

This is something that I do too! i used to think it was just because I had sprained my wrists a lot as a kid (very clumsy and unbalanced, even today at 19 yrs old), but the more I looked into it the more it seems like a stimming behavior. The more calm I am, the less I do it. But even when I'm calmed and I'm laying under my heavy blanket, I still do it occasionally. It's become both a habit and a stim for me, but sadly it doesn't seem to help do anything other than give me sore wrists.

On topic though, the stimming of your son probably increased when the stimulation around him increased. Stimming is a way to try and 'take control' of the input around you, and try to organize it so to speak. If something lightly brushes against your arm and it feels like ants crawling over you, arm/hand flapping will send vibrations through your arm- that you can control- to counter that antsy feeling. Humming to self or babbling loudly overpowers outside sounds because what you hear from your own voice tends to be 'louder' than environmental noise.

I just ordered and received my weighted blanket, and although I haven't seen an OT yet, I've already seen how it helps me. I can get to sleep easier at night, and in the morning my body isn't so low that I can't wake up without dozing off 10 more times during the morning. I can finally get up, lay under my blanket for 10 mins, do a few joint compressions to wake my body up a bit better, and then start doing normal morning activities. We'll see how much this helps come school time for me, at least.

(12-16-2010, 02:49 PM)Sila Wrote: [ -> ]"I just ordered and received my weighted blanket, and although I haven't seen an OT yet, I've already seen how it helps me. I can get to sleep easier at night, and in the morning my body isn't so low that I can't wake up without dozing off 10 more times during the morning. I can finally get up, lay under my blanket for 10 mins, do a few joint compressions to wake my body up a bit better, and then start doing normal morning activities. We'll see how much this helps come school time for me, at least.

You've reminded me Sila, I was going to mention my son's weighted blanket - he loves it, I've just reweighted it for him because he's grown so much. I made one for our old preschool, there was a boy there who was having serious meltdowns... for him it worked really well, the first time they used it it was like a switch, he was screaming and thrashing around and the teacher plopped it down on top of him and he stopped yelling, sat up and looked at the blanket and then pulled it up over his shoulders and went under it like a little turtle and didn't come out for half an hour, much happier and calmer. He soon learned that if he was feeling a bit bad he could get under it and take a break. My son says he goes to sleep better with it, "It's very cosy".

The weighted vests have some effect - our OT said that the best ones are also very tight/close fitting (which in our warm, humid summer climate in Sydney isn't very comfortable) - but the effect isn't very long lasting - only half an hour or so. Some people use a weighted lap pad when children have to sit still at a desk and work and are having problems. I've also used a bean bag cushion for children to sit on - make a little cushion big enough for a child's seat - and fill it with dried chick pea or bigger type beans, so that there's a good full layer for the child to sit on when it's out flat. They can use it on a chair or on the floor and it really seems to help stop the wiggling and jiggling that goes on.

BusyMum

Hi, that is interesting what you have said. So do you sleep with the blanket over you all night, and then it helps you function better during the day? Does it give you a quota of sensory input for the day ahead, i am trying so hard to understand how it feels. Or do you mean you use the blanket for 10 mins here and there when you need it? I have often wondered whether Soren would benefit from deep pressure vest or miracle belt.

I will take BusyMum's advice and keep a journal about what Soren's triggers are. However, the reason why I haven't done this already is because he does it pretty much all the time, unless he is sitting playing on a computer or reading books.

Let me know more about your blanket, thanks!

Well, I've only had the blanket for about 2 days now. Generally I get under it when I'm laying still and I notice my legs keep feeling 'antsy', like I have to keep moving them. I used to (and still do) crash my ankles together and bang them together, even if I'm laying down on my tummy. The only problem I have is that it's difficult for me to get underneath it without help because I'm not too strong and I want it to be even all the way across.

I haven't yet noticed if it's helpful for me to have it on all night for the next day, since my daily triggers change depending on what I'm doing and where I'm at. But it helps get me to sleep easier and I wake up less stressed and overall sensitive in the mornings too.

Before the blanket at night, I'd:

Spend a good 20 minutes turning around tossing and turning in bed
Kicking covers off/Pulling them back on
Rolling up tight under the covers
Get irritated at the light touches of my blankets against my face or skin
Feel the urge to keep throwing my body on the bed, even though I was trying to sleep.

In the morning I'd:
Be groggy when I woke up, hiding under the blankets or my arms for another 20 minutes
Trip over everything upon standing, and be very 'unbalanced' and clumsy. Bruised my thigh by running into the nightstand thinking I was further than I was at one point the other day.
Be overly sensitive to everything- Sound, lights, touches. My clothes felt like sandpaper in the morning, my own skin felt on fire, and my body was still trying to seek more crashing and other 'deep pressure' activities.
Spend the next hour or two with my eyes half open, wanting to fall back asleep- even though I had gotten 8 hrs of sleep that night.

and during the night, I'd toss and turn and violently throw myself on the bed a lot. I'd squeeze my body up tight against the wall, shoving my arms in between the mattress and wall, my head under the pillow, etc.

Now, with my blanket, I'm able to get to sleep within 15 mins or so without anything bothering me. My blanket gives me the deep pressure that my body wants, so I don't have to crash or squeeze into things. I'm using that as a blanket, so the other blankets aren't too itchy or too soft, which would throw off my light touch sensitivities.

I wake up easier now, spending maybe 10 mins to get up and be awake and coherent enough to do things I need to. I'm still sensitive during the day, I'm not sure if that's made a visible difference yet. But I'd definitely say it helps :3

tl;dr, sorry. <3

Edit: And my boyfriend, who is NT, has been stealing it and curling up under it too. He just asked me 'When I get rich can I get one of these too? They're so comfy' lol.

(12-16-2010, 06:03 PM)Pearso22 Wrote: [ -> ]Hi, that is interesting what you have said. So do you sleep with the blanket over you all night, and then it helps you function better during the day? Does it give you a quota of sensory input for the day ahead, i am trying so hard to understand how it feels. Or do you mean you use the blanket for 10 mins here and there when you need it? I have often wondered whether Soren would benefit from deep pressure vest or miracle belt.

You put them to bed with it on and then you are supposed to take it off once they are asleep but leave it where they can pull it up again - I usually remember to do it but I often find it's been pulled back on in the night. I don't know that it "fills up" the quota but if it means they get to sleep better and sleep more soundly that can't be a bad thing, they don't start the day tired. As far as use in the day time goes, it's whatever they decide they want/need. My son says it feels cosy, like a big warm hug.

Perhaps a vest or belt might be good for Soren if he's continually stimming, he clearly needs some kind of sensory input. People talk about a "sensory diet" - a whole package of things that add to the sensory input that is calming and organising for that individual. It can be as diverse as lots of crunchy chewy food in their lunch box or chewy toys (you can get things for the end of pencils for examples) to the weighted products, fidget toys (sqeezing etc), things to sit on, making sure that there's some kind of work out in the morning before school/work. I met one teacher who put a thick piece of foam under the desk of a boy in her class who constantly banged his feet on the floor - he got the stimulation of the stamping and she lost the extra noise in the classroom. Sometimes even a chair that can rock a bit helps - your OT can probably give you heaps of ideas and options once you see them.