Describing Autism to those with Limited English

I haven’t been around much lately, and for that I apologize. I have a 24-credit load in addition to 15 hr/week job, and things have been a bit stressful as of late. So 2 posts a week is probably going to be about what I can manage at the moment. When I’m working more with the boys or find some more free time, I will return to updating more frequently. Please bear with me until that point.

One of my new activities for this semester is tutoring Asian students in English as a second language. We have nine Chinese students and 1 Japanese student who are studying in America for the first time and have a subpar command of English. They are naturally very curious about what I am majoring in and the work I do outside of the school. Which led me to the issue of how to explain “autism” to individuals who spoke very little English.

So, over the past several weeks, I have needed to really focus on how to describe autism. The task is gargantuan. How do you explain in a brief paragraph something which presents differently in every  affected individual? I began by looking for unifying factors common to Lawrence, Josh,  and Charger, and between Carl, Justin, Steve, and myself. Here is what I wound up coming up with to say to the ESL students.

-”I work with children who have autism. This means that sounds, tastes, and sights which might be pleasant to you can be annoying or upsetting for them. They have difficulty learning how they should behave in front of other people, and might look or sound odd to other people. Although some things which are easy for most people, like making friends or playing games, are hard for them, they often are very good at something which other people find very hard. For example, one boy could read at age 2, one knows every song on every DVD he owns, and one is very good at fixing broken toys. I work as a tutor for these kids, helping them learn to talk, play games, and learn to deal with the sounds and sights which they find distracting or annoying.”

How do you feel about this summary? Is there something you think should be included? Omitted? Can you see yourself (or your child) in this description?

Getting it Right: Empowering a student with a disability

Having a non-classroom-friendly disability (i.e. Tourette’s), I’ve come to an understanding that not every teacher is going to be supportive. Indeed I’ve had some rough experiences including my favorite: “Yeah, I know you have TS but couldn’t you control it during your speech? Tourette’s is so unprofessional.”

But these experiences make me particularly excited about professors who “get it.”

Deciding to start off the semester on the right foot, I sent all my new professors a quick email explaining that I had Tourette’s, didn’t require accommodations (except for the alternate testing location granted by the honor code), and was willing to answer any questions. Then I waited, nervous about how these individuals I’ve never met would respond to this revelation. A week passed and my anxiety grew.

Then today, in my email, sat this message from a professor in her very first year of teaching:

“Thanks for letting me know. Perhaps you might stop by my office hours during the first week of classes and you can give me some tips on how I can be supportive.For example, if there is something another professor has done that helped your experience in the classroom, I’d love to hear about it.”

I couldn’t have asked for a more positive response. She’s not only understanding of the situation, but also aware that her knowledge of the best methods to handle it are limited and she’d appreciate my input. It is every self-advocates dream: a chance to express a preference based on knowledge of what has been effective previously. Professionals that work with the disabled population could save a great deal of time by following that exact method.

I take heart from the fact that this response came from a first-year professor. It gives me hope for how the next generation of teachers will move disability awareness and empowerment forward.

Physical Contact: Where’s the Line?

My mom works as a nurse at a school for students with both DD and autism diagnoses. One of the boys who goes there, “Jared” is 15, and has DD, autism, and OCD. He’s on a multitude of medications, and his parents want him out of the house. They have already been mandated twice by the state to pick him up at a hospital where they had left him. They hired an attendant to cover all of his needs at home. Needless to say, he doesn’t receive much affection to home. Working with him, however, is TSS “Bob”. Bob has been by his side for the past 18 months, and is generally agreed upon to be the best possible match for Jared. Whenever Jared gets upset, Bob will wrap him in a bearhug, and say, “Who loves Jared?” and Jared will respond “Bob.” It’s touching to all who witness it.

Well, almost all. Last week Bob was informed that the school had a strict policy against TSS’s touching students in that manner. Bob would have to cease such activity or be fired. Bob was forced to comply, and has to deny Jared when he comes in for a hug.

When my mom relayed this story, my first thought was, “gee, if I worked there, I’d have been fired months ago.”

Physical contact is a major component of how I interact with all three boys I work with. Lawrence likes to be snuggled with pillows, and to have raspberries blown on his cheek. Both he and Josh like to be lifted and spun, first in circles, then in a pendulum motion. All three boys sit on my lap to read stories, and all three, of course, love to be tickled on the arms, legs, and belly.

A great deal of progress has occured while physical interaction is occuring. Lawrence can now say “pendulum, please” and name the part of his body he wants tickled (i.e. “tickle arms please”). Josh makes a circle with his hands when he wants spun. Charger is discovering the use of adjectives when tickled “faster, slower, stop, go, more, less”.

All the parents seem to be okay with this sort of contact (at least, they’ve made no comments indicating they don’t approve). But I’ve started wondering about whether TSS (or therapists or babysitters or whoever) should be having this contact with kids.

On the one hand, it creates a great deal of potential for abuse, particularly in kids who are non or barely verbal, and thus could not report a crime against themselves. On the other hand, if we are trying to teach kids the benefits of interacting with other people, and then we shut down their attempts which involve a physical component, aren’t we sending them the wrong message?

I’m not sure what the solution would be. Only allow contact in the presence of the parent? Limit contact to certain parts of the body (private areas are obviously already off-limits)? What do you think? Do you let the kids who interact with your children to have physical contact with them?

Challening Classmates to effect Change

So, I’m still working on coming up with a new theme for Theory Thursdays, and I thought in the mean time I would answer another “Ask an Aspie” question. This one came from Good Fountain who asked:

“Hey Cale – you mentioned that you were Valedictorian of your HS class. Did you give a speech? What did you talk about? I’m curious about that.”

I did, in fact, get to give a speech, and it is one I’m quite proud of. And though it hasn’t seen the light in two years, I was able to dig it up and will present it here in full. Without further ado, Cale Irwin’s valedictory to the (my hometown) class of 2007:

See, when they planned this spot for me in the ceremony, they intended that I speak for a good portion of the afternoon. You’ll note that I came right after all the other speeches, so you’re all revved up for another, and right before diplomas are handed out, so your focus is clearly on the words coming out of my mouth right now. (Pause for laughs).

I’d like to begin my speech with a few compulsory thank-yous.

     First, to the patents. In (my hometown) School District, you began your journey as the second half of Parents as Reading Partners, run by the PTA. And even though we know authors like Anne Rice and Stephen King could never compare to the stories you read with your children about dogs digging up bones and cats who discovered someone stole their milk, we as kids were willing to enlighten you about this topic for 40 minutes a day, and we appreciate your willingness to be so educated. Then, as Mrs. (Band teacher) has reminded you at each and every concert you have ever attended, you evolved into chauffeurs. And though it didn’t break the bank to travel from (Elementary School) to (Middle School), the way it does today, we’re glad you made the effort that helped us arrive here today. Finally, most of you parents in the audience are discovering the joys of borrowing between sixty and two-hundred thousand dollars from various organizations to pay for college. Hopefully all the hassle will be worth its while when in four years you get the privilege of attending yet another long stuffy ceremony listening to more poor speakers attempt to draw out laughs.

     Next, I’d like to thank the teachers for attending endless staff development meetings and the school board for rigoursly ensuring that our curriculum was always relevant. (*Our school’s motto was curriculum: rigourous and relevant!)

     Finally, I would like to address the graduates. I believe Congratulations are in order, we did finally make it through twelve years of the mind-numbing public education system. But our progress has been remarkable. We entered not knowing what numbers were and left doing math our parents couldn’t understand half of. We entered barely able to spell our own names, and left having read Shakespeare, Dickens, Steinbeck, and all those other bleeding-heart liberals some parents would prefer outlawed.

We’re entering a world filled with possibilities- we can go to college, enter the military, or join the workforce. We can become parents or travel the world; we can still live the American dream, with a pure-bred dog to boot. Everything awaits us if we’re willing to work for it. There are so many positives awaiting us in the world if we’re willing to seek them out.

But it’s not all peaches and cream.

“The most distressing aspect of the world into which you are going is its indifference to the basic issues, which now, as always, are moral issues.” said Robert Maynard Hutchins, and he hit the nail on the head. We live in a nation where the majority of the population is privileged- they have full civil rights, can put food on the table, and lay in their own bed at night instead of prison or the streets. But because of this, they tend to forget the people who aren’t offered these basic amenities. The newspapers are so carried away with which celebrities is in jail for which drug offence or which comic repeated which slur to which individual that they don’t carry the news about the genocide in Darfur or the human rights violations in Iraq. There are still some people clueless about the massacres in Rwanda. Never forget? We don’t know what it is we’re supposed to remember.

We need to be the generation that chances this pattern. We need to wake up and raise awareness and take action. We’ve certainly gotten a running start here at the high school. The class of 2007 was a class devoted to raising social awareness. This class produced (Boy X), our President, who sponsored Darfurapalooza and Katrinaid, two concerts which raised money and awareness about their respective causes. (Girl Y) and (Girl Z), founded GAPP to raise awareness about issues facing modern teenage girls, and worked to empower women of all ages. I and an ‘06 graduate (Boy Y) formed the Gay Straight Alliance to bring to light issues of homophobia here and abroad. This year’s new environmentalist club sponsored Greenfest, a concert where over 200 students came to learn about ways they can lessen their impact on the environment. And this year’s class had 6 Gold Award recipients and 3 Eagle Scouts, a record number, all of whom used social action as the basis for their project. And that’s the beginning of a list that could go on for several hours about all that this year’s graduates have accomplished to ensure that our community is not indifferent to the ills of the world- that they are well aware and willing to make changes.

    But this is a spirit that has to be brought with us to college or the workplace or the military. Each person ought to find a cause they feel strongly about, whether it is one listed above or something entirely different, such as the status of minority citizens in Russia, and make sure that those around them are aware of the consequences of their issue-of-choice not being minded.

Modern technology has made is so easy to raise awareness. You can now broadcast your feelings or search out a cause or even become politically active through facebook. You could start a blog on the internet or form a club at your college. You could develop fliers or brochures, you could hold benefits and concerts. You could set to work the old-fashioned way and go door-to-door taking to people in your neighborhood or dormitory or barracks. Anything to get the word out and raise awareness. Because it’s true that we as a class have done plenty already, but in this world that we’re entering there is so much that we’ve yet to accomplish.

Before I leave, I’d like to share one more quote from you, from Elie Weisel, a Holocaust survivor who knows exactly what the consequences are when people ignore the social problems surrounding them. Weisel said, “The opposite of love is not hate; it’s indifference. The opposite of art is not ugliness, it is indifference. And the opposite of life is not death. It is indifference.” We are a nation which cannot afford to be indifferent any longer. Thank you!

I know it’s rather long, but it was days of work and revision and I would very much appreciate your reading and comments. Thanks.

 

 

Tomatis Therapy: A Parent’s Perspective

Another Guest Post!

Today Lydia (akaLittleFluffyCat) will be discussing her family’s experience with Tomatis Therapy. For a brief overview of Tomatis, be sure to check out this post here.

 Four years before his Asperger’s diagnosis, advocating for our older son at school was a full-time job. Teachers didn’t quite have me on speed-dial, but we knew each other well. They fell into two groups – the ones whose hearts broke for a smart, funny, kind little boy who didn’t quite understand how the world worked and had a tendency to melt down from time to time as a result, and the ones who said, “Ritalin. I believe he needs Ritalin.”

 

In second grade, they’d called in a school district shrink, who informed us that he believed we should put our son on Paxil. When I sputtered, “at SEVEN?” the shrink replied, “well, he’d be on it for the rest of his life, of course. And he’d need behavioral therapy.” My husband and I said, “Then we’ll put him on behavioral therapy. He’s got the rest of his life to try Paxil, if that’s what it turns out he needs.”

 

Behavioral therapy didn’t work very well, though. He didn’t seem to engage much with the therapist, despite liking her as well as he liked anyone. We moved to another state (not related) and changed therapists – still no effect. And no diagnosis that really fit.

 

We were at a loss.

 

One day I found an ad that said in large print, next to a picture of a smiling teen, “We picked this child up by his ears” – at least I think that was it. It went on to describe problems that sounded eerily familiar to me. I called and talked to the place in the ad – it used something called “Tomatis Therapy”, a gated listening program that trained the brain away from left-ear dominance with specially modified music that was listened to for prolonged periods through bone-conduction headphones. How the heck could that work, I wondered.

 

Then there was one of those weird synchronicity moments. We had a family wedding, and my sister-in-law, over a late-night snack, told of a friend whose little girl had started a new therapy and asked, “why does the noise in my ears make the noise in my head go away?” It was like a lightbulb turning on. I knew, knew, that she had to be talking about Tomatis.

 

We got our son tested, and they told us they believed they could help. It meant a big commitment of time – weeks of two hours a day, five-day-a-week therapy, then weeks of break to integrate, then more weeks of slightly modified two-hour sessions. It meant a big commitment of money, too. Insurance wouldn’t help with this one. We took a deep breath and jumped.

 

They treated the parents, also, keeping us on headphones the whole time our kids were, if we were willing, pumping anti-stress programs into our ears that we needed oh, so badly. Friendships were formed between people who had nothing in common save two things which were really everything – we loved our children, and we were desperate for something that would help them.

 

After the first weeks of intensive were finished, I, a nailbiter for as long as I could remember, had nails long enough to polish.

 

But more importantly, our son, ten days in, had visited his therapist. She excused herself and teetered out, shortly after the session started to demand, “HOW long have you had him in this new therapy you’re trying? He’s talking to me. He’s holding a conversation. He’s playing, and he’s talking to me about what I’m talking to him about. I’ve never seen anything like this. He’s like another child.”

 

The constant audio stimming he’d engaged in ever since I could remember was gone. The meltdowns were all but gone, save under the worst of circumstances. He still wasn’t one for long looks into someone else’s eyes – but he could do it, and no one meeting that gaze, then or now, eight years later, could possibly mistake him for anything else than special, in every good way there is.

 

Tomatis isn’t available everywhere. The website, www.tomatis.com, shows that the US is underserved. But if you can find it close enough to you, and if they determine it might work – do think about it.

 

I wonder sometimes, what our lives, what his life, would have been like now if we’d been able to find this therapy for him at a younger age. And then I wonder what our lives would be like now if we hadn’t found it at all.

Be sure to visit Lydia on Twitter: @LittleFluffyCat

Tomatis Therapy: The facts

 Today will be a bit different. I’ll be discussing the Tomatis Therapy, which one of you loyal readers had emailed me about. Then next week, her personal story of success with Tomatis will be posted for Theory Thursday.

What is the Tomatis Method?

In its most base form, the Tomatis Method is a form of Audio-Integration therapy.

 

How does it work?

Individuals are exposed to headphones which filter out sound, so that the noise is delivered directly to the bones of the ears, where it is believed sound is first processed. By reaching the bone first, the sound can be identified before it must be analyzed for useful content. The sound may be relaxing (elevator) music, classical music, or the mother’s voice, depending on the time and stage of therapy.

 

How long does the individual undergo therapy?

Typically less than a year, divided into three phases with varying levels of length, type of sound, and intensity of sound. In the interims between the phases, no therapy is given. This time is used for integration of the previous phase’s treatment.

 

What is the underlying philiosophy?

Tomatis believed that the voice could only make sounds that the ears could perceive. By exposing the individual to new sounds, these individuals will be able to incorporate these new sounds into their speech, thereby extending their vocal capabilities. The main focus of Tomatis is tuning the hearer into high-frequency sounds which contain consonants. It is notable to point out that many autistic individuals do have a difficult time with identifying the consonants that begin words.

 

Is the Tomatis Method effective?

Practicioners of Tomatis claim that 60% of autistic individuals will be benefited by the therapy. Many parents tell of enhanced concentration and speech capabilities after using the method. In fact, next Thursday thelittlefluufycat will be posting about the gains she has seen in her son since beginning the Tomatis method.

However, most empirical studies have found little to modest gains in sensory sensitivity, and no to very limited gains in all other areas. All gains seen were only seen in younger children. Although Tomatis was seen to have no adverse effects, some other audio-integration therapies have been shown to.

For more information about Tomatis Therapy, this video provides a good summary of the physical mechanisms, and this site provides a great deal of information about the theory and practice of Tomatis therapy.

Autism Comorbidities Week 6: Tourette’s Syndrome: an Insider Perspective

Today we have a guest post from MommyDearest, who blogs at the Quirk Factor. She is talking about her son’s Tourette’s Syndrome and ASD. One of the cool side notes is that she also has Tourette’s Syndrome.

At about age 2, I began to notice that Jaysen didn’t have the language skills that other kids his age did. Like many other parents, I brought my concern to the pediatrician, who told me not to worry because kids all develop language at their own pace- but I should stop trying to teach him Sign Language, just in case it was hindering his verbal language. Okay- I bought that for the time being, but it was still in the back of my mind.

When Jaysen started daycare at 2 and a half, I remember telling the staff that he has a pretty significant separation anxiety, has trouble with transition, and not to worry about his video tape- he just likes to carry it around.

About 6 months later, the staff approached me that although he was very smart, Jaysen didn’t like to do things with the rest of the group, and did not like to follow direction. They too were concerned with his language development. I took him to see the district speech therapist, who diagnosed him with Hyperlexia. He did not begin therapy because she too, felt that he was still too young for concern. I researched Hyperlexia, and it fit like a glove.

As time went on, the daycare became more concerned. He did not eat like the rest of the kids, and was starting to exhibit meltdowns, and had I had him evaluated for Autism? I was extremely offended that they would even suggest that my son was Autistic. I’ve worked with Autistic kids for 6 years, and although they were awesome, it wasn’t what was going on with my son. I knew something was going on with him, but it wasn’t Autism. I took him to a pediatric neurologist. She talked to me for 15 minutes. Aspergers.

Asper-who? I started my research on Asperger Syndrome. It didn’t fit. How could my son have Asperger’s when one of the distinguishing characteristics was excessively loquacious? My son wasn’t speaking more than one word requests.

I took him for another eval at another speech therapist. Expressive and Receptive Language Disorder. More research. Ahhh…this seemed to fit better. He started therapy. This SLP was wonderful. Jaysen loved her, and she worked really well with him. She had countless exercises for us to do with him at home, and the echolalia gradually began to fade. Real words were emerging.

Time went on with this therapist. It got to a point where Jaysen’s behaviors were impeding her progress with him. He began working with her OT partner for sensory integration. They said he was quirky, and may be a touch on the spectrum, but it could also be that he would always just be quirky. They suggested I take him to a psychologist that they knew, who specializes in behaviors, just to see if it was quirkiness, or something else.

My initial meeting with this psychologist (who was also wonderful), was about Jaysen’s history, development, and an all around feel for the type of kid he is. I expressed my frustration with people and the Autism thing. I never bucked these diagnoses because I didn’t believe my son had issues, I just wanted to make sure he had an accurate diagnosis.

I asked him, “why can’t he just be a Hyperlexic kid, has a language disorder, some OCD’s, and sensory issues?” He said “He can. When those things come together, it’s referred to as an Autism Spectrum Disorder.”

And that was my A-ha moment.

He went on to explain that Autism wasn’t the classic Autism that we all thought of. That it is a spectrum disorder. He explained the spectrum, and how these children can vary in areas across the spectrum. He explained stereotypes- “Flapping” didn’t just mean flapping your hands or parts of your body, it was also those repetitive behaviors I assumed were OCD. Jaysen’s official diagnosis was PDD-NOS but that’s not the point of this post.

It took the right person to explain to me that Autism is more than the Autism we knew 10 years ago. It’s more than a checklist of characteristic attributes. As I researched, it became clear. I understood the spectrum.

I became aware.
 
I was comfortable with the Autism diagnosis, and I should have known that once I am comfortable with something, life often throws me a curve ball. 
 
It was one night at bedtime when I first heard it.

Smack-smack-smack. What the heck was he doing?

Smack-smack-smack. I propped myself up so I could see Jaysen’s face. Smack-smack-smack-smack. He was smacking his lips. Did he not rinse good enough after we brushed? Is he thirsty? The smacking continued.

“Jaysen, do you want some water?”

“No.”

Smack-smack-smack. I noticed that the smacking was accompanied by a new mouth-movement. The movement was like he was getting ready to say something, then his mouth closed.

Open-close. Open-close. Open-close. Smack-smack-smack.

Shit- could this be TD? It can’t, can it? There’s been no med increase, and he’s even refused it on occasion.

Jaysen’s always had some sort of tic (for lack of a more appropriate word), lasting from a few days, to weeks- But they’ve always been temporary. I first noticed them around age 3. First it was this eye thing. He would blink his eyes very deliberately in patterns. Then it was a breathing thing where he would shoot out air from his nose as if trying to get something out of there. Honestly, they didn’t concern me because I knew why he was doing them. I couldn’t explain why, but I knew…because I do those same things.

This was different (or was it?). There is a semi-control with my OCD’s. I know I am doing them, yet I can’t stop myself from doing them. However, I have trained myself to do them in a way that is unnoticeable to others. They’re right out there for everyone to see, but I’ve adapted them so no one will.

Were these mouth movements something similar to that? Were they a temporary? Were they actually Tardive Dyskinesia? How do you know? How can you know?

It’s something that I felt I needed to be sure of. I needed to know for sure because it affects his meds, which in turn affects his anxiety, which in turn affects his aggression.
 
I immediately sought out the psychiatrist, who in turn referred us to a neurologist who was also a movement specialist.  He would be able to tell if the movements were part of the ASD, a separate disorder themselves, or a reaction to the med.
 
I have to break here to mention that I’ve often felt that Jaysen and I have this connection. That I understand him. That we have some of the same quirks. I know why he does them, but can’t explain it. Was I a touch on the Spectrum too? I’ve firmly believed that whatever wasn’t “typical” with him, was the case with me as well.

I was not expecting this.

Doc: He does not have Tardive Dyskinesia.
Me: Okay. Are you sure?
Doc: Yes. TD has an onset of adolescence. This is not TD. It’s something totally different.
Me: Alright.
Doc: You have it.
Me: Okay…
Doc: It started when you were in early childhood.
Me: Yes…
Doc: As an adult, you’ve learned to adapt, so it’s virtually undetectable.
Me: Yes…
Doc: It’s genetic, and you passed it on to your son.
Me: Okay…

At this point, I was wondering what the heck the deal was with this huge “reveal”. Was I supposed to guess the affliction? Was this a guess your diagnosis game?

Me: So…what is it?
Doc: Tourette Syndrome.
Me: Tourette.
Doc: Tourette.
Me: Well alrighty then!

Being disability savvy, I realized that Tourettes was more than just the infamous coprolalia of hollering out obscenities, and was open to hear what Doc had to say. He proceeded to explain that he’s not totally convinced that Jaysen has ASD, because Tourette is “like ADHD plus tics”, and a lot of the quirks that I described are “classic Tourette tics”. It is often confused with OCD (so much for self-diagnosing my OCD). Apparently, Autism stims can look a lot like Tourette tics as well.  

I was not convinced that was the case. The Doc didn’t seem to think of Autism as a Spectrum Disorder, stating that since Jaysen had social skills (will answer questions, has eye contact), he didn’t feel that he qualified as Autistic. I tend to think his view of Autism was stuck more with classic Autism.  Besides, does Tourette Syndrome have sensory issues as well? What about behavior issues? If it was strictly TS, why does Jaysen have so many issues, when I had practically none of the same ones he has?
 
How the two intertwine is interesting, yet surprisingly natural.  To the “untrained eye”- is it a tic, is it a stim?  Does it matter?  For all intensive purposes, it really doesn’t matter.  The only difference I make is that an ASD stim is executed for a reason.  Whether it be visual input, tactile input, proprioceptive feedback… there is a benefit to the person by doing it.  Tics do not appear to benefit the person, other than the relief of being able to release the tic itself.
 
There are other instances that the two overlap as well.  Was that a perseveration or a verbal tic?  A little more challenging than the tic vs. stim conundrum.  My experience tells me that verbal tics are short lived, often staccato in nature.  Perseverations go on and on and on and on and on and… well, you get the point.  But again, is it important to differentiate between them? 
 
Short attention span, defiance, outbursts… some of the overlapping is impossible to decipher if it is Autism, Tourette Syndrome, or just Seven Year Old Boy.  I figure I can drive myself batty trying to categorize Jaysen’s quirks, or I can enjoy him and offer him the support and understanding in the areas he needs it, regardless if it’s ASD, TS, or SYOB.
 
Recently, I’ve been trying to make Jaysen aware of his differences.  I don’t ever want him to feel like there’s something wrong with him, and there is a reason that he does what he does.  I think the more he understands his quirks (the good, the bad, and the ugly), the more comfortable he’ll feel in his own skin.  The TS has been fairly easy to explain.  I think he’s starting to understand what a tic is, and when he has one.  There was a time that he was afraid of some tics (particularly the lip-smacking one), where he felt out of control of his own body.  Explaining tics and seeing people with them, has helped illustrate to him that it’s not something he’s alone in, and these people are normal too.  He’s not afraid of them anymore.
 
People often say, “you’re such a Saint.  I could never have the patience for that” when they hear about Jaysen.  I’m not a Saint.  I’m a mom.  A mom who loves her son, inside and out.  A mom who’s trying to do what all other moms are doing- and that means building a solid foundation to help Jaysen maximize his potential to the fullest. 
 
Would I change him?  Absolutely!
I would make him happy to clean his room.

Also, Monday MommyDearest turned twenty-sixteen. So be sure to go over and offer her a happy birthday!

If you are interested in guest posting about you or your child’s ASD and comorbidity, please see the instructions here. If anyone has completed their post, please let me know so I am able to research the topic for next week. Thanks!

Edit: Just a note, as there seems to be a bit of confusion. Every line except for the last 3 and first 3 were written by MommyDearest. This was not an interview. The bolded quotes were simply designed to highlight what I thought were the most important things she wrote, so that in case the length deters you, you’ll at least get the highlights. Of course, I hope you read the whole thing because it is quite interesting, but if you are short on time and absolutely can’t, at least read her bolded quotes.

Autism Comorbidities Week 5: Tourette’s Syndrome

Tourette’s Syndrome. The mere mention of the word conjures up images of children screaming cuss words and homeless people making faces in the subway. And while that is one aspect of Tourette’s Syndrome, it is nowhere close to the complete picture.

Tourette’s Syndrome is one of the four diagnoses that fall into a conservatie model of neurodiversity, with the other three being ASD, Epilepsy, and OCD. Often, individuals with one of these four diagnoses will also have one or more of the others, with the greatest overlap being between OCD and Tourette’s.

The diagnostic criteria for Tourette’s vary by country, but the agreed upon characteristics are:

• at least two motor tics
• at least one vocal tic
• exists for at least one year, without more than 3 months without a tic
• onset before 21 (18 in the DSM)

A motor tic is a nonpurposeful movement of the body. The typical first tic is excessive eye blinking, but not every Touretter exhibits this tic. Neck tics, shoulder jerks, and jaw movements are also rather common. Tics usally begin in the face and with time may move from part to part down the body. It is possible to have multiple tics at the same time, and to have body parts tic in synchrony. My current motor repetoire includes jaw adjusting, shoulder jerks, elbow jerks, stretching my right arm out and tapping three times on the surface in front of me, and slapping my hands on my thighs twice. Tics often appear and fade and then reappear again. My first motor tic was a neck jerk which has recently all but disappeared.

Vocal tics are misleadingly titled. They can include animal noises, grunting, sniffing, or speech. Releasing cuss words only occurs in rouhgly 10% of individuals with Tourette’s. I currently have two vocal tics: a sniffing/snorting, and a throat clearing, though these showed up several months after the motor tic onstart.

75% of individuals with Tourette’s Syndrome also meet the diagnostic criteria for OCD, suggesting that the two may be manifestations of the same underlying abnormality. Thus many Touretters also engage in other ritualistic behavior particularly counting and cleaning. There is some question about whether all the tics in Tourette’s may in fact be considered compulsions, but the jury is still out on that one.

The voluntary nature of the tics varies by individual. Some are able to stifle tics for much of the day and only express them in appropriate places, but many others cannot contain a tic for more than a few seconds. Many times an individual will be ticcing before it registers that a tic will occur, making the movement entirely involuntary.

There is some question about discriminating between Tics and Stims. Although there are some differences, many movements fall into the grey area, and the approach to both is so similar as to not really require distinguishing. You can find a previous post about this difference here.

The visibility of TS is both a curse and a blessing. If you brought a social worker into a classroom and asked her to identify the student with ASD she probably could in 10 to 30 minutes. If you asked her to find the kid with TS, her time would be reduced to 10 to 30 seconds. This is beneficial as many people are willing to be more accomodating when they can physically see your disability. At this time no professor would deny me a private testing facility or suggest my handling a scalpel. But it also opens the Touretter up to bullying and reproof. Many adults do not understand that the tics are involuntary and most kids enjoy shows which mock Touretter’s such as the infamous Tourette’s guy. I was lucky to have my onset once in college, as this allowed me to bypass most of the insensitive comments of middle and high schoolers.

If your child has a tic, do not immediately jump to the conclusion that he has TS. Roughly a quarter of all kids will experience a tic at some point in their lives, but only 1% of the population goes on to develop TS. The best way to respond to tics is to have the child examined by a neurologist to ensure there is no other underlying cause, and then to generally ignore the behavior. Remember that your child cannot control the tics, and punishing them will only make them more anxious and probably increase rather than decrease the frequency of their tics. Some articles suggest pointing out to a Touretter every time he tics so that he may be more aware of them. I would highly recommend against this behavior. Most Touretters are acutely aware of their tics and pointing each out will only worsen matters. Having a sense of humor however, particularly about funny tics, can never hurt. My friends and I have developed code meanings for many of my tics, which provide a great deal of amusement.

For more information about tics and Tourette’s, be sure to visit TSA and Tourette’s Plus, as well as the Quirk Factor. Mommy Dearest will be guest posting next Thursday on her son’s experience with Tourette’s and ASD.

Autism Comorbidities Week 4: SPD

Today is a very exciting day for Spectrum Siblings. After nearly 4 months in existence, I am welcoming its first guest blog post by Natalie at “Adopting the Spectrum.” This post offers a personal perspective on her Aspie daughter Hannah’s Sensory Processing Disorder.

 My daughter Hannah is 2 ½ years old. She has Asperger’s Syndrome and Sensory Processing Disorder. We always knew there was something a bit different about her than other kids her age, even as a very young infant. We saw differences like the amount of time she spent asleep, unlike the other infants we knew she didn’t sleep much at all during the day, naps were practically nonexistent (still are unfortunately!), she had an almost unnerving attention to details, her high stranger anxiety was through the roof and lasted way longer than any of the books suggested it should, perhaps the most important, but least concerning initially was her inability to interact with other kids her age, the list went on and on.

Those social problems soon became concerning, however. I can remember her being 6 months old and having to sit her on a blanket facing away from another baby (one she had spent several days a week with since birth by the way so definitely not a stranger) because if she knew that this other baby was looking at her she would scream bloody murder. I just didn’t think that was normal, but I had a hard time convincing others since I was a new, first time mommy. At 18 months Hannah was placed on the autism watch list at her well baby check up. She was developing fairly typically in most areas, was way ahead in her language, but still lagged behind in social areas. She was doing fine with adults for the most part, but just could not interact at all with any child under about 8 years of age. When she still had not made much improvement by her 2^nd birthday we were referred to the local early intervention agency. They evaluated her and found her 2 standard deviations below the normal in the social category so she qualified for a developmental therapist.

We didn’t know she had any sensory problems. We just knew she didn’t sleep and she had social problems. Her DT was the first to suggest sensory problems. Hannah’s sleep difficulties were what made her suspicious at first. She did a sensory questionnaire and found there to be some definite areas where she felt Hannah might have sensory issues. She gave us some immediate information about SPD and an informal sensory diet to try with Hannah and recommended an OT evaluation. Upon starting the sensory diet we saw a dramatic change in Hannah’s ability to cope with social situations. It was like we had a different kid. Where she once had complete meltdowns that pretty much shot the rest of the day, she now only shut down and we could bring her back once we reduced the sensory stress placed on her and gave her some proprioceptive and vestibular input. We were finally able to leave her for an entire church service in the nursery without being paged to come get her because she was inconsolable. This was a HUGE deal.

We found out that Hannah was a huge sensory seeker for the most part. She craved oral, proprioceptive, and vestibular input. However, she was sensitive to sound and breeches of personal space. Unpredictable people, AKA kids her own age, made her uncomfortable because they were loud and she never knew when might get too close or touch her. With lots of heavy work and appropriate things to chew on she was able to regulate herself much better in social situations. We also learned the cues that alerted us that a meltdown was impending and were able to use activities off of her sensory diet to hopefully stop it before we got to the point of no return.

Although the sensory diet helped tremendously, it still didn’t solve all of Hannah’s problems and we started to see other worrisome behaviors begin or worsen. Her head banging didn’t go away, her obsession with lining things up grew, her inability to understand others emotions and her unusual responses to others emotions did not progress at a developmentally typical rate. One thing that puzzled everyone was her reaction to strong emotions of others. If I were to stub my toe, for example, and say, “Ouch!” Hannah would run from across the room and hit me. Her doctor eventually referred her to a developmental pediatrician and psychologist. The developmental pediatrician gave her a preliminary diagnosis of Asperger’s Syndrome pending what she believed would be confirmed after the psychologist’s evaluation.

One of the biggest things we have noticed is that while Hannah’s social difficulties mostly stem from her Asperger’s, if we skimp on her sensory diet then she is much less able to cope with her social anxieties. If she goes into a sensory meltdown or even just a shutdown then she loses the ability to know what is socially appropriate or even use the social scripts we have taught her and will refuse to take social risks. For her a social risk is simply going up and playing next to another child or speaking back when spoken to. She has a precocious vocabulary, but when she is overwhelmed she often becomes selectively mute. If you refuse to speak then it’s difficult to engage your peers in a socially acceptable manner.

Be sure to visit Hannah and Natalie at Adopting the Spectrum.  And I am looking for the next guest poster for 2-26, on your child’s (or your own) ASD and comorbidity. Please let me know ASAP if you would like the 26th spot so that I can begin to research for the facts post.

Autism Comorbidities Week 3: Sensory Processing Disorder

Most parents of kids with autism are familiar with Sensory Processing Disorder. You’ve probably read the Out-of-Sync Child, maybe even read each new version as it was released.  I was thinking I could just rehast that information here, but I thought this might be more useful.

Imagine the entire world is contained in a living room. The room contains a couch, a television, a microwave with -popcorn, and a lamp. This is what this world could be like for your SPD child:

Auditory:

• The television is blasting; it’s so loud his brain feels like its screaming. Except to everyone else in the room, the TV is on normal or sub-normal volume. OR
•  He’d like to watch the TV he really would. But the humming noise of the microwave and the breathing of his sister seems in his ears just as loud as the television and he can’t make sense of what the words on the television are saying. OR
• He’s trying to figure out what is occuring in the show, but the dialogue seems meaningless to him. Did that character just say “I need a chair” or “I need a bear?” Maybe “I  need some hair?”

Vision:

• He wishes someone would just turn the lamp off. And close the window; the sunlight is bothering him. But the television is so bright too. OR
• He’s trying to watch Blue and take in the sights. But there is so much activity on screen. And so many colors. Ooh look Ooh look! OR
• He’s trying to watch Dora and they’re talking about the map. But he can’t really follow Dora across the screen; though there are stripes there marking her path he can’t seem to follow the lines and she seems to be moving randomly.

Touch:

• The fabric on the couch is driving him nuts. Why does it have to be plaid? He can feel each little panel of cloth digging into his skin like razors. OR
• He’s trying to watch the TV with his brother, who, excited by the action on screen keeps poking him to make him pay attention. He’s so afraid of the next poke that he can’t concentrate on the TV. OR
• He keeps squirming on the coach trying to force himself deeper and deeper into the pillows. He can’t seem to get enough tactile input and without that input can’t place his body in space.

Vestibular

• He sits on the couch. After a few minutes he slides off. He sits again, and again he slides off. He can’t seem to make his body stay up straight to match his brothers. OR
• His head keeps lolling into his neck and he needs to force it back up. He keeps his hand on his chin to keep it from falling and to make sure he can stare straight ahead. OR
• Sitting on the couch, he can’t feel the pull of gravity. He finds that sitting upside-down allows him to feel gravity as the blood rushes to his head, but he can’t watch TV that way.

These are just a few different examples of the SPD universe. Any of these issues can exist alongside any other of the issues, and some may be visible at some times and not others.

Here are a few key facts about Sensory Processing Disorder:

• It has three names: Sensory Integration Disorder, Sensory Integration Dysfunction (SID), and now Sensory Processing Disorder (SPD)
• Though the symptoms are physiological (of the body), the cause is neurological (0f the brain).
• SPD is not found in the DSM-IV. Experts love to argue over whether or not it is a distinct disorder, or merely a sign of an underdeveloped nervous system, or only found as an adjunct to other disorders.
• Medicine won’t treat SPD, and magic won’t cure it. The focus of therapy (like with ASDs) is helping the individual learn ways to cope with their sensory difficulties. Some of these difficulties will fade over time, but some may remain throughout the individual’s lifetime.
• SPD and ADHD are very often c0nfused. A child may look inattentive because his sensory stem is failing him, or he may fail at sensory-related tasks because he has attention defecit. Or he may have both attention deficit and sensory integratiion difficulties, and the two may complicate one another.
• Most individuals with ASD have sensory processing difficulties. However, not all individuals with SPD also have an ASD.

If you think your child may have undiagnosed SPD, you may want to fill out the SPD checklist, and bring it to your next neuro/gp appointment.

If you are interested in learning more about SPD, you may want to visit the Sensory Processing Foundation.

And for a few tips on helping your SPD child, you can either click on the sensory tag in this post (which will bring you to a list of posts I’ve written on my own sensory issues), or visit this blog.

Be sure to tune in next week when we will hear from Natalie @ Adopting the Spectrum about her Aspie daughter Hannah’s Sensory Processing Disorder.