Posted by: myautisticmuslimchild | February 22, 2011

Sensory Issues, Are They Important?

I was asked often, why do I put such an emphasis on sensory issues with my son? Is it really an important issue with these kids or another money-making intervention.

My answer to those individuals was always and will be … yes this is a very important issue to discuss and combat. Kids and adults who are in the autistic spectrum are often struggling with processing sensory input.  Inadequate sensory processing  can lead to negative behavior, and it can certainly make the ASD individual’s life, and caretaker/parent’s life  very difficult. That is why so important to understand what these kids might be experiencing, so we may eliminate, reduce, or even teach these children how to deal with certain sensory input.

Many people including neuro- typicals have some sort of sensory issues. Some people do not like loud noises, bright lights etc

The reason I decided to write about this matter is my personal experience in a recent past.

One of  my son’s classmate’s mom had some medical appointments, and had to go to the doctor. She needed someone to pick up her son, and take him to school. This seem very reasonable, unless you know this child. Many times I had seen them struggling to get him in, or out of the car.

Also, I saw him being all over that car when they arrived to the parking lot. That was kind of scary. She was always so apologetic, and stressed out early in the morning. To make a long story short, no one wanted to give this little boy a ride. No family members, friends or other parents from school. I can not blame anyone not volunteering, or accepting this task. His behavior is definitely an accident risk, driving with a child who unbuckles himself,  him getting out of his seat, climbing to the front , jumping while driving on the expressway. So many times they were driving in front of me, and I was very afraid for their safety. Well, I am sure some of you may have guessed, I ended up giving him a ride to school,  and  home. I was a bit worried first, but I figured it is only a 30 minute ride on the freeway what can go wrong, right?

Our  travel was a smooth as it can be. When we arrived to school, he got out of the car no problem, even the teachers were surprised and jokingly asked me what I gave him. Going home was a piece of cake too. His mom and dad was shocked seeing him un-buckling after we stopped, and I opened the door for him. He was happy, and carefree running to his mom to give her a big hug. After that hug he started his usual  screaming,  pushing, rubbing, hitting, you name it he probably did it.  That was the time when it downed on me he might be sensitive to her perfume. I always knew that she was around even if I didn’t see her b/c of the smell of her heavy perfume. She was in a state of shock what just happen, so I grabbed the opportunity to tell her politely maybe there is a problem with him processing some sensory input, like the heavy  smell of perfume .I wasn’t sure if I made my point clear untill next morning when she drove him to school, and he was as calm as a little lamb.

So as you can all see sensory input disorder do occur, and cause problems, but they can be  erased, reduced, or a child can be trained to deal with it.

Amin’s old pediatrician told me once…” sensory processing disorder is like buying an old house with frayed electric wires. If you turn on the TV, the light in the kitchen starts flickering, if you start your toaster oven, your microwave might stop, and so on. So, you need to get the electrician there to smooth out the edges of those frayed wires, so the connection will be perfect, and you can live in that house happily and enjoy it. For our sensory kids,  we need to train them so they may be able to process the sensory input, so it will not interfere with their daily life, and they are able to function in a typical setting.”

Back to my initial question: Is the sensory processing issue important?… As you can see from this short story it is important, and to learn about it and understand it made a huge difference in many people’s life.

I will be writing about sensory processing disorder in a future, till that happens I would appreciate all of your input, and  personal experiences in this issue.

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Responses

  1. such a well explained article. Just loved reading it. Good job done.

  2. This is the third era I came to your blog, I like your blog very much, likelihood your extra noble

  3. but I try to add your blog among my reads each day because you have reliable entries

  4. This was a wonderful post– thank you for it. I’m featuring it on my blog thAutcast.

  5. Fantastic post mashallah! Lyme disease causes me to have the same issues with sensory input. I think the only difference with me is tha I can easily tell people what they are. I hate bright lights too, so driving in the day seems to bright and driving at night is horrible with all those streetlamps and car headlights glaring at me. My favourite time to go outside is during very grey and cloudy weather, which funnily enough, most people refer to as “miserable weather” lol!

    I hate many types of noise too. Certain sudden loud noises cause me a lot of distress such as fireworks or balloons popping so I’ve had to avoid a lot of parties and family gatherings cos’ as well as being noise sensitive, I have an “exagerrated startle reflex”- so it’s like having someone shout “BOO!” in my ear every so often and it shatters me sometimes. The worst noise that I’m most sensitive to though are flies. It’s a visual disturbance too cos’ they fly past at such high speed and my eyes are a bit like the old fashioned cameras with slow shutters- rapid movements look a bit blurry and tricky to process… so combine both the visual processing problem with the sound processing problem and an exagerated startle reflex and a whole lot of distress is being caused in less than a second.

    I’m also sensitive to the smell of perfume and my mum gets very annoyed that I don’t let her spray perfume in the house or hairspray or use scented fabric softeners or air fresheners. I cannot sit in my dad’s car for more than five minutes because the previous owner filled it with the stink of air fresheners (almost a year ago and I’m still sensitive to it!) that cause me to struggle to breathe (if I were non verbal I’d be tempted to unbuckle the seatbelt and jump out of the car too). So whenever I need to go out anywhere by car, we often have to make other arrangements and ask other people to take me in their cars (usually my brother or family friend). Using a cab would involve the same risks as many of those have air fresheners too.

    The saddest thing about all of these problems though, is that when I sent off my application for disability benefits and requested a home visit (as my home has a much better controlled environment and they can’t stop people turning up to their medical centres wearing perfume or bringing noisy kids along)- they always refuse a home visit even when my Dr sends a letter to them confirming that it would not be appropriate for me to go to their medical centre.

    I realised that although it’s supposed to be a medical centre to assess a person’s level of disability, they have no clue, not a tiniest mustard seed’s worth of sense about sensory input issues, or chemical sensitivities which are often more debiilitating than a person who has a more recognised disability such as blindness or losing a leg or two (though I don’t mean to belittle other disabilities in saying that).

    Eventually, I have to chase up the medical centre with more information about my mobility problems before they will admit that I need a home visit even though my mobility problems are not that extensive and the REAL reason I need the home visit are these sensory input issues you’ve mentioned. It makes me angry that so called Drs who are meant to see the extent to which a person is debilitated by a medical condition cannot take a person’s medical needs into consideration- even when my own Dr has written to them to back up what i told them.

    You did the right thing in helping this mother figure out what was triggering her son’s reactions and if he reacts towards other things, inshallah that can also give clues as to other things that cause him distress that can perhaps be rectified. Sadly I’ve also noticed an expectation among many neurotypical adults that those of us with such sensitivities shold be expected to simply put up with these “normal sounds” like it’s just something a person can learn to live with. I don’t need to learn anything- I lived with those sounds all my life without incident but it only became an issue when my illness developed so it’s not a matter of just learning to get used to it.

    Neelu

    • salams Neelu,
      I am so glad for your reply. i was wondering if you can give us some clues how to deal with these issues since they are not really avoidable. Since you experience these things maybe you can shed light on what kind of reactions you have how you feel and how can we make things better for those who can not express themselves. I firmly believe that sensory issues are overlooked most of the times, and if we are more vigilant about it, we could prevent lots of behavioral issues, and reduce psychotropic meds given these kids. 9i know my last statement will not set well with the drug companies and those who are making money of it)
      So any input suggestion you have it is always welcome.
      Thanks again

  6. This is a subject quite close to me, I’m so glad to see a Muslim sister blogging about this issue and the need to raise awareness on this topic is paramount amongst our communities. I have been thinking for a while to do a book for a muslim autistic child and would like to know your thoughts on this. Please e-mail me when you are free, I would like to discuss this more appropriately.
    Regards
    Anaya

  7. Well the first and most obvious thing I can think of is to try to make the home environment as safe as possible when it comes to these things. I personally think that a good place to start would be to make sure cleaning products are natural and safe (steam cleaning is particularly good) as a lot of cleaning products either contain strong chemicals, or strong perfumes to give the appearance that the product is “floral” or “lemon fresh” etc. This is true of products used to clean clothes as well, especially fabric softeners. I have sensitive skin so I have to use “non bio” cleaning products for my clothes.

    Avoid air fresheners completely. I use a natural one with orange aromatherapy oil diluted in water and can cope with that though I know some people have worse sensitivities to the point that they can’t cope with any smell- even the smell of onions being fried or normal cooking. Those are the worst cases I know of and I realise some smells can’t be avoided, but the best place to start is to avoid the unnatural products that produce unnatural smells. For me, I find that I can tolerate the smell for maybe 5 mins even though I’m uncomfortable with it but after that I struggle to breathe and panic- then I need to leave the room where the smell is or maybe go outside (though I wont usually go outside cos’ it’s noisy in which case I’d be stuck and panic even more).

    Noise sensitivity is the worst for me. Alhamdullilah I’m lucky to have quite considerate neighbours and we make sure the home enviroment is well controlled when it comes to noise. I switch the TV to ‘mute’ whenever commercial breaks come up cos’ they always increase the sound intensity on those. Sometimes certain types of background sound effects and music can upset me as well and then I have to mute the TV or miss part of the programme I wanted to see because of that sound.

    Nowadays my parents record their favourite programmes and watch them when I’m not in the room because they get annoyed if I mute one of their programmes if a sound bothers me. Actually it’s not just the sound that bothers me… it’s too emotionally overwhelming sometimes. Like for example if the main character in that programme is crying and other characters say nasty things to her, I’ve developed a sort of emotionally fragile state in which I can’t filter out the fact that it’s only a TV show and they’re only acting- silly little scenes from trashy drama shows can really upset me for hours and get to me, which can be very draining so I often avoided shows that messed with my emotions too much. I also watch TV when they are not in the room (usually at night cos’ I tend to be awake at night) usually because my mum has a habit of talking when I’m trying to watch something and then I can neither listen to her properly nor watch the programme properly because each is a distraction from the other.

    When I first developed noise sensitivity, I had to unplug the stereo next to my bed because when it was switched off in ‘standby’ mode, I could hear the sound of it on standby and couldn’t sleep. I also had to get rid of the clock (i had that clock and stereo by my bed for years without any problems before this symptom developed) because the little tick tick sound wouldn’t let me sleep. I’ve since put a much quieter clock next to my bed and that works better.

    The worst noise for me is the sound of flies or bees buzzing. I can hear them sometimes when no one knows they are in the room cos’ my hearing is oversensitive… to the point that people think I’m being paranoid until I’m proved right when a fly emerges from behind the curtains or somewhere. I definitely couldn’t sleep through such a noise. That noise actually hurts and shakes me up quite badly- then lowers my mood for the next couple of days, so if I encounter that noise more than once in a day… things can become very unpleasant.

    The closest example I can give to the reaction I have to this noise is to say it’s like an electric shock sensation. I had an electric shock by accident once when I was 12 years old and this sensation was very similar. When a fly buzzes past (the closer to my ear it is, the worse the feeling gets), it sends a sharp pain down my jaw and it feels like my brain is being vigorously shaken like a rattle from the inside. I’m guessing it’s similar to a seizure in that sense. After the noise has gone, sometimes I can hear the noise in my ear again a couple of times and get the same shock reaction- almost as if the noise has left an echo which takes a while to fade away.

    Noise sensitivity is the most distressing of all my symptoms even though I don’t experience it that often because the home environment is usually well controlled and I don’t venture outdoors much where noise is harder to avoid (security alarms, construction/roadworks, motorbikes zooming past etc). Even so, whenever I sit in a room (even in hot summers) I keep the windows shut to keep out flies and keep out the traffic noise. My mum opens windows in other parts of the house and then closes them when I enter and my parents spent a lot of time last summer chasing flies cos’ I just couldn’t be in the same room as that noise. Initially they were irritated by it and expected me to get used to it, but it soon became obvious that that wouldn’t be possible.

    I also can’t tolerate the vaccuum cleaner or the noise of the washing machine spin cycle (even though my mum is noise sensitive, particularly to electrical items but these sounds don’t bother her so I guess it’s a very individual thing). I can just about manage by staying upstairs when they vaccuum the downstairs area and vice versa but I had to learn an unusual trick for that.

    Diffuse lighting and Diffuse sound:

    A friend with a similar illness taught me about this. As I’m light sensitive, she told me that I need ‘diffuse lighting’ in the house. This means having a light source that kind of spreads light evenly around the room, rather than having spotlights or sharp rays of light surrounded by darkness. We do this by having halogen uplighters in most of the house and most have dimmer switches so that we can adjust them to a level that suits us.

    Any lights that have a type of flicker to them are really bad for people with sensitivities, including people with autism. Some people can’t cope with fluorescent tube lighting but alhamdullilah I can. Having said that, I really hate those new spiral shaped ‘energy saver’ eco bulbs that are sweeping through the UK these days. I’m eager to find some alternatives as they really don’t suit me and make me feel anxious and jittery. Other types of flickering lights are a problem too, such as the flashing of cameras you see whenever a celebrity is on TV, especially on the red carpet or somewhere like that.

    Anyway, I realised that just as diffuse lighting is a way of allowing my eyes to cope with a relatively normal level of light without distress, I also realised that to some extent, the same principle applies to sound. So for example the noise of a vaccum cleaner downstairs, or drilling next door would normally cause me distress, but I can put on loud music in the room (has to be very specific loud music without any background tinny noise or too much of a fast beat) and it makes that drilling noise sound quieter and more bearable. I realised that this was the case because I used to find my cellphone ringtone too loud, but then I went out to a busy train station and my phone rang but the sound didn’t bother me at all, so I realised the sound of people walking through a bustling station diffused the phone noise. Even so, I still cannot be in the same room as that vaccum cleaner or drill when the music is on because it can only go so far in diffusing the sound and it has to be done very carefully. I’ve heard some people with autism benefit from listening to ‘white noise’ on a radio- maybe because that diffuses other noise too.

    My second cousin has aspergers and she wore earplugs the whole time that she was at my house so I presume she’s had problems with noise sensitivity too. Some people with these sensitivities benefit from ear defenders (the type that men wear when they dig up roads with a pneumatic drill) or others wear noise cancelling headphones. I find that these things have their uses, but are a mixed blessing. I also personally think that in some cases, prolonged use of such things can actually increase the sensitivity afterwards, though some people swear by them so it’s a very individual thing as to whether it helps someone or not.

    Sorry this message is long, but I wasn’t sure how much detail you needed, or how much of this is relevant to your son’s situation. This message only gives a small glimpse of what it’s like- there’s so much more that can be said about this. For me it is THE biggest barrier in my relationships with people. Some of my friends have noisy little kids so I avoid seeing them because I cannot tolerate that noise. My brother has young kids who I avoid cos’ I can’t cope with that noise level even though they’re usually fairly well behaved- but kids will be kids. I had an awful experience a couple of years ago at a wedding when some naughty kids started popping balloons and I had to leave. I had to leave my cousin’s ‘mehndi’ (pre wedding party) because all the women wore too much perfume and I couldn’t cope… and the list goes on. It caused me to miss most of the family milestones; weddings, birthdays, family gatherings etc and distanced me from a number of friends cos’ I didn’t know where to begin to explain why I couldn’t visit them anymore. Let me know if you have any questions.

    Neelu


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