Desperately Seeking Senses

This post is now available in the ‘Life with an Autistic Son’ ebook available to download from Amazon.

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48 Responses to Desperately Seeking Senses

  1. Autism Mom says:

    Again, that’s exactly the way my son has been and is.(My son’s 10 years old right now)
    He’s been a big time sensory seeker. Doing “heart stopping moment things” more, being louder than anybody else, making noises more than anything else…you name it.
    And yes, I have the book as well. My son’s psychologist told me about his book when my son was 5,6 years old. I’m not so much of reading person usually,simply I don’t have time to read anything dealing with my son every minutes and seconds I have, but I did read this one over and over. And I really thought many things in this book really makes sense for me and my son’s behaviors.

    Anyway, again I enjoy your writings so much and appreciate your honest thoughts about everything. Thank you!

  2. pombruv says:

    I have a grandson who sees things a little differently to most. He is four and the most beautiful person I know. Fortunately for us he doesn’t give us quite the difficulties that you face with your little boy but whenever I’m a bit down I think of you and am inspired. Stay strong.

  3. What is Autism Outreach, please?

    Five years after initial diagnosis of ASD, I was told my son had ASD and ADHD. After reading this, I think that actually the ADHD part was always more of seeking sensations – but his was directed at anything electrical – flicking lights on and off, making bleeps, sticking things in electrical sockets (or whatever). He spent half the night doing it too. Not exactly the same as you describe, but I think the motivation was. It just clicks.

    What makes me angry is that ADHD was the only thing discussed. OT was never discussed, either, only medication. The paediatrician offered ritalin. After months of hand-wringing and hair-pulling I agreed to try it. At the time he was a danger to himself and others. Of course it didn’t work because ritalin only works for ADHD. I was a single parent and unable to get respite (social services said I was lying about my son’s behaviour) and had two other, younger, children. In the end, I guess I’m just thankful that he’s not like it now, four years later.

    I’m also thankful for this post. Here is maybe an answer to the question that sometimes floats in my mind – ‘it wasn’t ADHD but what on earth was it?!’

    • My daughter has the same ADHD misdiagnosis. She jumped off the exam table at the doctors office and landed on her shins during the middle of the evaluation! I firmly believe she has SPD because it fits when you add in her responses to certain benign stimuli, such as noises, lights, smells, motion. I have Asperger’s and I’m the same way, when things get to be too much the brain just can’t handle having to process the senses.

      • I don’t have Asperger’s (who knows where the spectrum begins and ends), but I can definitely relate to all the sensory stuff. Nowadays, my son’s response to overload is to tune out. I realised – I do the same! I also like my rocking chair – which is an ‘acceptable’ sensory thingy lol. I’m glad to have read this because now I don’t have to feel embarrassed about these things. It’s a little piece of ASD in me. And I ‘get’ my son a little better too :-)

  4. A hammock in the garden has been a great addition to H’s sensory diet – it gets used in all weathers and has greatly reduced his sensory seeking behaviours.

  5. Jo Curphey says:

    Our 13 year old son has always liked having his head ‘squeezed’ – he pushes his head under our arm and we have to squeeze it hard between our arm and our body! Also, from the age of about 9 months he often wouldn’t settle down to sleep without us rocking him in our arms first – however it was not gentle, slow rocking he wanted; we had to hold him tightly and jog up and down on the spot while jiggling him up and down quite vigorously!

  6. thebear says:

    Hi . Glad you intercepted yet another perilous moment in the nick of time. That you are able to share the challenges your family faces with the rest of us makes me feel glad , and normal , but i am gladdest of all that someone speaks the same language as me. A myriad of wtf’s precede many of my utterances towards Small Boy. I’m not just as glad of the joys of .delayed echolalia though .Small Boy asked the teacher last week ” wtf was that ” when someone dropped their metal lunch box in the class .Glad she could see the funny side.

  7. A good heads up reading this post as L is off for his first appointment with the OT in December for his sensory issues. I don’t think his sensory seeking is generally so extreme but at bedtime i think your sensory diet would work well. I would swear too if I found L at the top of the stairs upside down ;- ) Thanks for another informative post.

  8. hthrcarvell says:

    I would have cussed too:)

  9. I recommend you stop by http://understandingspd.com. That’s where I learned that inverting the head is good for self-regulation. Now, I make sure I let my four-year-old autistic sensory seeker do head stands on the sofa, go head-first down the slide, hang upside off the recliner or else hold him and lean him backwards myself. Of course, I would draw the line at head stands on the stairs.

  10. alesiablogs says:

    I have a 19 yr old severely autistic son. I plan to share about him soon on my blog! Love your blog! Alesia

  11. Congrats on being more sociable. This is something we have to force ourselves to do. Our 12 yo dtr. low functioning, and while everyone “understands” they really don’t, they can’t, and we usually just have the energy to have or got to events. That said we are having people over this Thanksgiving, and well, we will see.

  12. Those are some really great tips. I have a “fiddle box” full of little doo-dads for my campers to hold when I teach summer camp. I love the lap blanket at meal times. I’m going to see what other suggestions I can incorporate this summer. Great post!

  13. I’m homeschooling my daughter next year because at this point I’m tired of begging for services. I have Asperger’s and I know what my daughter needs more than they do and I am able to connect with her on the spectrum level. They wont even evaluate her for an IEP for speech or OT and she doesn’t qualify for a 504. It’s frustrating and the school is less than helpful.

  14. bchadda says:

    I look after Autistic children at a summer scheme, and I recognise everything you’ve said here. There’s some really good advice in here, and they’d be invaluable to anyone working with Autistic children. Well written, too- has it all! :) Well done!

  15. Bubble Gum says:

    Great post! It’s candor is wonderful! Having an autistic child requires all of one’s best parenting skills (times 1000) and yet, all parents are just human. It makes sense that you swore out of fear for your son at the top of the stairs! Most people would. I was a child therapist for children with autism and their families for many years. The sensory issue is so very important and can change a child’s life! Also, people with typical social skills can forget, or not know, that autistic kids are socializing too, in their own unusual way. In addition to understanding the importance of stimulating behaviors and adding in a diet for it, I asked my families to pay attention if the stim behaviors increased during social situations, especially if it was the extreme attention seeking behavior (possibly, like upside on top of stairs).

    Sometimes autistic kids, like typical kids, are acting out saying, ‘hey, I’m over-stimulated here by all these people,’ or they’re like typical kids who just want to be involved, but don’t know how to socialize in typical child ways, or in adult settings, or in their own non-verbal way. One example of how typical children do this: Just the other day I was with a friend, whose 2 year old daughter (not autistic) was frustrated that we were not playing with her, instead we were talking about adult stuff in an adult way. She kept trying to play on her own, but she really wanted us to stop talking. She was not making that clear in an overt way, she was just acting strange and I knew it from years of intuitive work with non-verbal autistic people. She started repeatedly smacking a toy against the ground, then eventually started crawling up the side of a precarious toy cabinet until the danger of it forced our hand to give her our complete attention. Had I been with an autistic child, I might have lumped it into disorder-influenced behavior, but in that moment, I knew it was just a non-verbal way of socializing, saying she wanted her mother’s full attention and didn’t want to be alone.

    Autistic people’s deep, unexpressed need for connection is so easily overlooked due to their generally aloof, self involved and non-empathic behavior. However, humans are fundamentally built for relationships– the basic unit of human survival is 2– and even the most disabled, non-verbal autistic child has shown me that they know this in one way or another. I’m passionate about this issue (obviously, as I babble on here ;-) ) because it’s such an overlooked issue. I asked my families to observe if their children’s behaviors increased in social settings and if so, is it that the child is over-stimulated by the their inability to participate, or over-stimulated by too much noise/movement, or are the extreme stim behaviors just the same way any typical child would act out to get attention in a social setting. Whenever we find children in a social setting (not being controlled by a parent) we find that they get louder, run around more and basically are more dangerous or wild.

    I really enjoyed your post, and insight on the sensory diet. I found you on Freshly Pressed and haven’t browsed through your site yet. I’m sure you cover the socializing topic elsewhere– I’ll read around. Great blog! All the best to you!

  16. Great post – invaluable information. Congrats on being FP! I used to counsel families with children having behavioral challenges, including austic-type behaviors and sensory seekers. OT’s are a great resource and I’m glad you have such support. Be patient and strong – all children are a joy and a blessing. Take good care. All the best to you and yours.

  17. It is so very hard to keep your cool isn’t it? Our eldest is 6 and has autism, and my wife and I are noticing similarities in the youngest too. They are hard work. Thank you for sharing, I don’t feel guilty now. Oh and congratulations on being Freshly Pressed :)

  18. Ann Kilter says:

    Great writing. Have been there.

  19. segmation says:

    Thanks for making me more aware of senses!

  20. At school, our son does a lot of heavy lifting, usually walking around with a gallon of rice while chewing gum. Mostly, the gum keeps him from chewing inedible objects. At home, he bounces around and runs in circles unable to focus on or complete tasks without extensive redirection. (He also hurts himself alot while running in circles.) We’re considering adding Intuniv to his current medication, but a lap blanket could also work wonders. I can’t bring myself to even think about a weighted vest. I’ve never thought of his fidgeting as being part of a search for equilibrium.

    Once at Disney World, my husband thought my MIL had him and my MIL thought my husband had him. We came very close to losing him that day while running to catch a train. Oh, the panic… Good luck to you.

  21. Elisa's Spot says:

    i LOVE the out of sync child, i wish there were one for older kiddos! Asking the teen who needs heavy work/weight input to vacuum doesn’t go over well, neither does the suggestion of one OT, to let him move my furniture, frown, scowl.

    I commend the honesty about the swearing! I find that I really have no other outlet, I am only one person and here it is soooooooooooo frustrating when we gain a skill, only to lose it again. It can be hard to tell, a full of will thing, vs an auttie one. So, I generally just go with the will thing and set limits anyway. I’m really tired, going to bed now. Ty for post!

  22. Kim Harris says:

    I worked with children that have ASD, and I praise anyone that is expected to live a “normal” life.

  23. Hi there, first time reading your blog. I don’t have a child on the spectrum ( we think) he has severe epilepsy. I burst out laughing when you described your response to his stunt on top of the stairs, I too am prone to swearing. I could really imagine myself doing the same in that moment, thanks for sharing, I feel less alone.

  24. pianomikey says:

    My little guy is definitely a hyposensitive “sensory seeker” as well. While I’m not autistic, I definitely share that “aspect” of it as well. I have tics, scratchings, pressures, flicks, stretches, twists etc. that I thought were normal for decades, until my wife and father started eyeing me like I was a nutball. It’s kind of cool though to be able to peer through one little window into his world.

    I never did much high-wire balancing though… that had to be terrifying! Was it at least carpeted stair and at the bottom, or wood stairs and and tile? *shudder*

    I’ve found that lots of hugs and squeezes calm him too, which is very emotionally helpful for his mom and dad too! He loves to roughhouse, like spinning, throwing on the bed, and getting really crazy. As long as it’s in a darkish room without too many people around, it really fills a need for him.

    If it helps, I’ve noticed that with my guy, he does much fewer sense-seeking things (like chew on a shaving razor… different story) when I’ve given him lots and lots of input. Kind of like a quota of stimulation. Then he’ll be content to just flap around the house and squeal, which is a lot better than looking for anything sharp to shove into his mouth.

  25. SharingMom says:

    You should read “Out of Sync Child Has Fun”. It’s the follow up book to the one you mentioned. It will give you a lot of ideas to try for his sensory needs. Also, I am working on a regimen to help control possible “leaky gut syndrome”. I will post it on my blog in the next couple of weeks. I am documenting our experience right now. Subscribe to my blog if you want to receive the post when it’s ready. http://Www.sharingmom.com

  26. Combat Babe says:

    My nephew has PDD. I can’t say I know all about it, but I can say through all the work we have done with him and programs he was in with early intervention, I cannot believe he has come as far as he has. I don’t know where your son places in the spectrum, but I think it’s fabulous that he has parents like you and your wife who are working with him. Wonderful and informative post. Congrats on the Freshly Pressed.

  27. Such a beautifully written, open and honest post.

  28. paulturner76 says:

    This is a very interesting read.

    I have a nephew who was recently diagnosed on the autistic spectrum, at the late age of 12, and as such I’ve been trying to find out as much information to help understand the condition and how to help him understand his surroundings.

    His mum and I have noticed this sensory processing disorder in him over the past 10 yrs, and it seems to be getting worse, and we never linked it to his autism. He was forever fidgeting, chewing on things, and being unable to sense when things are hit or not. I just put it down to him growing up, just a little quirk he has. Now I understand that it is another aspect associated with his autism. And the plan guide line listed above I feel will be such a help with his sensory processing.

    Thank you for bring this to my attention

  29. How I wish I had read something like this fifteen years ago. My son is on this spectrum, but has coped within mainstream school and home without diagnosis. I knew that there was something ‘different’ from when he was a tiny baby, from his responses. He grew up being loved simply for himself, and thus was able to feel accepted. But I would have found life a lot more comprehensible if I had had knowledge about his specific difficulties. Now he is a young adult, 19 and second year university, having steered himself through a very discombobullating world at times. I am so proud of him. Congratulations on retaining a sense of proportion, and humour!! Great post.

  30. vijiravin says:

    Know someone with an autistic boy of about 5 years. Been seeing how life changed for the couple totally with the arrival of the boy but he is definitely improving. This is one very useful blog still i can’t share this with the mother because she is still unfortunately in denial.

  31. tearmatt says:

    How extremely touching, the way that you’re dealing with this is so insparational; if only we could take a cast of your character and make it the standard for all mothers of the world. Thank you for sharing. :)

  32. Just stay strong, because I believe that a child that overcomes the limitations of Aspergers can achieve things neurotypicals only dream of! Don’t give up; your son will do amazing things just like me!

  33. humanistdisciple says:

    Reading things like this absolutely warms my heart! Thank you

  34. hangryhippo says:

    Your last paragraph really made me tear up. I have a friend who is currently studying in graduate school specifically to work with autistic children and I am definitely sharing this with her. Thanks so much!

  35. I wanted to share some hope, the stories you share are all too familiar. At age 4, my son couldn’t speak and we couldn’t even go out to dinner let alone entertain at our house. Three years ago, he couldn’t read and I worried every day that he would ever be able to. Today, my son is in his first year of Junior High, in a hybrid of mainstream and special ed classes. He reads at a 4th grade level(we read with him every night for a year to get him into the habit of reading words) with Math and History at his current level. We’ve never used drugs of any kind, our doctors in Nth CA took a homeopathic approach. That meant my insurance paid for zero, but the results have been more than worth it. There is real help out there, there is light at the end of the tunnel.

  36. Stephanie Overton says:

    This is so heart warming. It is amazing how humans find a way to get on with life even when faced with challenging circumstances. Your son sounds like a beautiful child and you sound like amazing, supportive parents. Good luck with everything!

  37. As a child I was diagnosed as being some kind of autistic kid. I am still not sure if I am high functioning or what, a lot of my behavioral responses are still inappropriate to many situations. But having one foot in the world of the “sane” and “autistic” I believe that autistics see and perceive reality in a way that is not wrong but just different. Right now I am doing sports marketing for a company called http://www.playgroundentertainmentgroup.com. It is very rewarding and I feel I am in a place where I have a lot to contribute. My only point in saying this is that I feel that you should be patient with your son as much as possible, because I know what it is like being small and having people scream at you and not know why. It just made things worse for me.

  38. mightwar says:

    Thank you for sharing the “sensory diet” information. It is something tangible and practical that my friends, colleagues and I can use with the children we work with. It’s very much appreciated.

  39. vishalthinks says:

    its not so easy to go through everything you have been going through and still be sensible and sharing like this. This post is about a serious matter and has a light tone while taking care not to take the subject lightly. May all parents have such involved nature like yours. Keep up the good work! :)

  40. B's Dad says:

    The incredible response to this post, following a Freshly Pressed WordPress feature, is truly moving. Thank you so much to everyone who liked, followed and commented. I will, at some point, reply to your comments in more detail. This blog means a lot to me, so to know it has reached other people is incredibly gratifying. More importantly, autism awareness is being spread. Thank you so much.

  41. Pingback: A Christmas Gift For You | Life with an Autistic Son

  42. Prometheus says:

    Very interesting piece. One person I’ve worked with about autism was called Ziva Rom from Israel. She has a clinic in Israel called The Elem Clinic and she has helped many autistic children and I’d say created miracles. Her approach was also a sensory one. Thought it might help :)

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