Speech Is Not Language

Perhaps one of my greatest frustrations with A has been her inability, even after years of therapy, to gain functional speech.  She has made a lot of progress, from nothing to sounds and many approximations.  But without augmentative communication in the form of an iPad, she is very difficult to understand.

It was cute to see tonight while she was cleaning up, she picked up a shape puzzle and put the pieces all in, and Mom and I listened ... oh so quietly, if we listened, we could hear her verbally label all of the shapes ... oval, star, square, rectangle... but even we had to listen so hard to make it out.

Many people look at A and have low expectations of her because she cannot speak.  A uses this to her advantage to get out of doing things she'd rather not do.  The assumption is that if she cannot speak she has nothing she wants to say. 

But, of course, nothing is further from the truth... there have been several times in the past where A has looked at me, said something I could not make out, and then was frustrated she had to go to her iPad to tell me something that may or may not be quite what she was trying to communicate.

In many journals, outcome in autism is associated with the "acquisition of language".  Clinicians will often say, "does A have language?"  But that is not what they are really saying.  They are really saying does she have verbal speech that is functional to communicate.  Language and speech are commonly related, but they are not the same.

A child like A might has language using augmentative systems (eventually we hope she will simply write her thoughts and have them read with voice output).  She communicates with a voice output system (Proloque2Go) that works like an electronic version of PECS, but with much better organization.

A child with speech may still not have functional language.  Some children who are fluently verbal still use PECS or other augmentative systems because their speech is not functional.  It is clear speech, but does not make sense, or communicate the intent of the speaker.  A child who can repeat anything you say but say nothing spontaneously based on internal motivation has speech, but not language.

My son T has good speech and language, though he struggles with a lot of jargon and some delayed echolalia.  Sometimes he drifts into "jibber jabbering" where very little communication occurs.  He struggles to express his thoughts sometimes.  But I have seen other children who use speech more like a "stream of consciousness" where almost all thoughts are being spoken, with little clarity of communication intent.

For A, what makes me feel hope is the increasing number of adults with autism who are non-verbal, yet are leading meaningful lives with a degree of independence, such as Carly Fleischmann, Jeremy Sicile-Kira, or the men (Tracy and Larry) of Wretches & Jabbers (a highly recommended film).

My sense is there is a sub-type of autism, and I think A has it, along with Carly and Jeremy and the men from W&J, that causes severe apraxia of speech.  Jeremy, Carly, Tracy and Larry have all said their bodies do not co-operate with their desires - they don't move the way they direct them to move, and they struggle with intense sensory dysfunction.  Having it explained makes me feel both happy to have understood A better, but also sad in knowing what she struggles to do in order to interact with her world.

I think Jeremy says it best...

"Good things  about my autism is my ability to see beautiful colors in everything I look at. I see bright colors even in  dust."

I have often wondered what A sees when she looks at things.  I wonder if she sees bright colours too. 

 

A Kind of Acceptance

When Alanna was younger, I used to buy her a lot of toys.  I still buy too many toys for the kids.  My wife will tell you it's my weakness.  Toys "R" Us is a bad store for daddy.

Alanna was never interested in playing with toys "properly" when she was younger.  She would play with parts of the toys, or lick them, smell them, stare at them, or do any number of "weird" things with them.  This perplexed me a great deal, especially before her diagnosis.  I tried to show her how to play with them properly and figured if I buy the "right" toy, she would like it and play with it a lot.

Fast forward to the present day...

We have taught Alanna how to use a number of toys as they were "designed".  We have taught her how to play with pretend toys, and how to even pretend how to use things for functions for which they were not intended (e.g., feeding a baby with a block!)  We are presenting trying to teach her to play with a variety of toys if they are laid out for her to play with, and we're trying to do this without a visual schedule because this is unnatural and we only want to do that if it is absolutely necessary.

Alanna will play with toys, but usually not for very long without prompting.  She loses focus and goes on to the next thing.  This is usually tied to sensory regulation.  If she is regulated and isn't engaging in activities to stimulate her senses, she plays better.  If she needs deep pressure, bouncing, running, etc. to stimulate her senses, the playing will not last long unless it is prompted.

It occurred to me the other day the purpose of play really is supposed to be fun.  So buying her more toys with the hope she will find out fun means I have to obtain toys she finds fun.  Most toys she finds "fun" are sensory toys.  She will also play games with me, but on her own terms.


I used to think Alanna needed every waking minute to be "redirected" to ensure she was learning from her environment.  Not only with that attitude completely burn you out as a parent, it is also unfair to your kids.  Here's the reality - for Alanna, bouncing on the trampoline and bouncing on her bed is fun.  Pulling out facial tissue and rubbing it all over your body is fun.  Licking stickers and sticking them all over the place is fun.  Emptying your closets and throwing your clothes on your bed is fun.


Maybe playing the way I want her to play is work.  Maybe she does it sometimes because she is interested but mostly because I want her to do it.  Kind of like when your dad tries to show you fishing is fun, but it's not.


Lest you think I've converted to neurodiversity with this post, I haven't.  Play skills are still needed for school, to interact with others and to learn other skills.  But it's still work.  I can hope she will eventually find it fun.  I can try to make it fun, but if I'm really giving her time to relax, shouldn't I let her do what she wants to do to relax (within the limits of safety and sanitation?)


Maybe the next time she is rubbing something all over her face, I'll just join her.  It's work for me, but maybe that is the price of entering her world.

Stim Time

Stimming, or "self-stimulation", is a term many parents who have children with autism understand.  Children with autism enjoy many activities that seem odd to us and are generally done alone.  Generally I dislike stimming because it's time that could be replaced with more productive activities, but I realize Alanna enjoys it and sometimes she just needs to do it.


Some favourite stims include:

• Bouncing on the couch
• Kicking her feet
• Many different sounds, including a cry sound that is really really irritating
• Throwing things and picking them up, then throwing them again
• Chewing on inedible things (PECS are a favourite)

Usually stimming means:

• I'm bored
• I'm tired
• I really need sensory input (see I'm bored above)

This one is new and admittedly was kind of funny... (don't mind the highly expensive duct-taped couch).

Question and Answer

One the nice things about blogging is that with the right tools, you can see how people ended up on your blog.  Most non-regular readers come from Google, and it is interesting to see what they searched for to get them here.  In this entry, I will share some of that, plus perhaps try to get some more relevant information to the searcher, should they ever come back.


Search term:  autism and two months old and staring at trees; staring at trees autism; autistic people hate certain textures.


Entry hit:  Sensory Processing and the Autistic Child


This entry is probably the most popular one on this blog; it gets hit all the time, probably because sensory issues are very common with autism and they are hard to understand.


As for the particular searches I am guessing these people were looking for...


Alanna did stare at things for way too long when she was younger and this was a huge red flag for us.  As for a two month old - some people claim children can now be diagnosed or at least considered "at risk" this young, but I don't think very many people can do this.  Looking back, Alanna had signs at two months but they were very subtle.


On textures - yes, this is true.  Many children with autism hate certain textures  in their mouths, on their hands, on their bodies.  Sensory integration is a therapy that can be used to give these kids more or less sensory input as they need it.


Search Term:  ibi ontario 5 year old cutoff
Entry hit:  You Reap What You Sow


If the person searching for this was looking for information on cutoffs, let me say this:  the age cap has been gone for years.  It used to be true that children were discharged from early intervention when they turned six, but that is not true any longer.  The government of Ontario fought this in court (Wynberg v. Ontario), and even won, but then decided to remove the cap.


Search Term:  autism ontario services best place to live
Entry hit:  None


I think this person was looking for where they could live to get the best services.  This depends on what you are looking for.  If you want the largest variety of services, then go to Greater Toronto.  However, most of these require a lot of money.  If you are looking for the shortest waiting list for IBI in Ontario, then move to the Southwest region (London, Chatham, Windsor).


Search Term:  RDI toy ideas
Entry hit:  I Don't Get RDI


Another popular entry.  People are looking for more information on RDI probably because you have to pay money to get more information on RDI.  I am no expert on this topic, but based on what I know from other families, any and all toys can be used with RDI and the activity is based on your regular family routine.  Your RDI consultant would tell you what to do (note:  you have to pay for this consultant).


Search Term:  why is ibi so expensive
Entry hit:  I Really Hope IBI Works


This is a great question. Short answer:  IBI is intensive ABA and is a term almost exclusively used in Ontario.  It's expensive because to do it right, you need 30-40 hours of intervention per week.  Some quick math:


30 hours a week x $25/hour for a therapist x 52 weeks - $39,000
3 hours a week x $75/hour for a senior therapist or BCBA x 52 weeks = $11,700
3 hours a month x $175/hour for a psychologist to supervise x 12 months = $6300


Total cost = about $57,000 per year.  That's why.

It's Harder to Understand Than Have Pity

I went this morning to our local Early Years Centre, which has a special program called "Dads Can Play Too".  It's a pretty awesome idea - I was impressed to see that even the play group leader is a dude.  I brought both kids; Nana was happy to help watch Tyler while Alanna was running around.  I explained to the lady at the desk that Alanna was special needs (and had autism) right before she took off and ran away (her timing was impeccable).  Alanna was not herself.  She played with almost no toys, had poor eye contact and wandered aimlessly.  She took crayons and threw them.  It was almost as if she'd regressed six months in six minutes.  I don't think I've seen her this "autistic" in a long while.  Many of the dads were staring at her.  When Alanna was younger, many parents often told me they would never know she was autistic unless I told them.  Now that she is almost 2 1/2, this is a much rarer comment.  The typical sign is her lack of speech - many 2 year olds at her age are talking non-stop.  It was obvious something was different just in the way I spoke to her.  As I have been taught, I always use simple speech with Alanna to help her understand what I am saying.  I speak slowly and repeat.  To a dad of a typical kid it would look pretty odd.  Eventually one of the dads I met (his son was playing nearby) asked me, "She doesn't talk much does she?"  I explained, "She has autism."  He nodded, happy with the explanation but I could tell he didn't really know much about autism.  When we were leaving, Alanna had a small meltdown and the women outside watched her with concern, looking at me and her with pity.  Everyone tried to be helpful and I tried to be gracious in accepting it.


When I left in the car, I cried silently as I drove home.  I couldn't help myself, it was too overwhelming.  Seeing Alanna "interact" with a kid her own age was heartbreaking.  Talking to the kid was so easy.  It was natural.  No saying, "good looking", or "nice talking".  Just an easy, back and forth discussion.  She is so behind, I thought to myself.  These things are so hard for Alanna.  I forget how hard it is for her until I see a kid her age and see how easy and normal it is for them.  


Looking back now, Alanna probably did pretty well. Six months ago she would have melted down and lost it... I wouldn't have even been able to go in.  But she went into a completely strange place with strange adults and kids and was able to cope.  She was not herself but I am guessing she was overwhelmed by everything and shut it out to cope.  She was immediately all smiles and more herself when we got home.  So maybe it wasn't a bad outing.  I'm trying to think positively here.  I know that many of Alanna's repetitive behaviours and unusual interests are greatly diminished from six months ago.  


But I learned something today.  I have to admit I'm much more compassionate to people with disabilities now that I have a daughter who has one (go figure).  If you see a child with an obvious disability (or even anyone for that matter), don't pity them.  They are coping and if you feel sorry for them won't make them feel any better.  When someone tells you about a disability, they want your understanding.  It's to inform you so you know what's going on - it's not an invitation for you to say poor parent, you have a child with autism.  I know Alanna has autism.  I'm just telling you so when she runs around flapping her arms and doesn't talk you know why.

30-40 hours? REALLY?

Sometimes well-meaning individuals question why I would ever want to have Alanna in intensive therapy for 30 to 40 hours a week when she is currently receiving only 15.  I have heard comments like, "shouldn't she just play?", or "won't she get dependent on her instructors if they spend so much time with her?"

I think this stems from a misunderstanding of what autism is and how education treats it.  Individuals with autism are completely learning disabled.  Most of the time to get started you have to draw them out of their world long enough to even get them to interact with you - this often requires intervention from an occupational therapist to deal with sensory problems.  Once a child with autism has some sensory regulation (whether through providing needed stimulation or making an environment tolerable for an over-stimulated child), you have to get them to attend.  That is, be able to look at you and pay attention to you for more than 0.2 seconds.

Once a child with autism can attend a little, they can start to learn.  But they typically have zero imitation skills, receptive language, speech or expressive language.  They have motor impairments.  They can lack ability to process tasks cognitively.  An autistic child's ability to learn from their environment is essentially zero.  So any attempt to allow them to play is likely to result in non-productive self-stimulatory behaviours, like jumping, bouncing, running around, staring at lights, flowers, etc.

Alanna after six months of therapy still has the speech of a ten month old (she is almost two and a half) and the receptive language of perhaps a 13-14 month old child.  Socially, she is perhaps in the 16 month range.  She is catching up, but she is so far behind.  Kids with autism can't play.  They have to be taught how to play, just like everything else.  Most time on their own is dead time, wasted time.  As they acquire more skills and catch up, their "alone" time becomes more productive and the self-stimulatory behaviours can decrease.

Kids with autism need intensive intervention.  If they don't get it they may lose skills until they are so developmentally behind their chances at catching up are greatly diminished.  Sure, they need rest - time to not think and to relax like the rest of us.  But most of their waking hours, like most typical kids, need to be doing very specific educational activities designed to help them learn, because they just can't on their own.

Sensory Processing and the Autistic Child

Interestingly, the DSM-IV definition of autism never mentions "sensory processing dysfunction" as a condition for autism.  But almost all children on the autistic spectrum seem to have problems with their sensory processing.  As a parent of a child on the spectrum, it's important to be aware of your child's sensory dysfunction and his or her triggers.  Most children are either over-stimulated or under-stimulated in a particular sense.  The best part of this is that this can flip-flop at a moment's notice and lead to a "meltdown".  What's a meltdown?  Is it like a tantrum?  Many people look at Alanna (who is 25 months old) and think her meltdowns are tantrums.  After all, she is 2.  But there are important differences between the two:

• A tantrum is usually caused by a denied request for something Alanna wants.  She cries and gets upset, but the cause is generally clear and the tantrum eventually eases.
• A meltdown is almost always caused by sensory over-stimulation.  Usually these are sudden occurrences that seem to have sensory stimulus (e.g. bright lights, loud noises, sudden odours) and continue to escalate until the stimulus can be removed.  In many cases, we do not know the cause of the meltdown and it's only resolved by moving her to a new location (usually going home or at least getting in the car).  A meltdown is not my toddler expressing that she is not having her way - she is expressing her discomfort and pain the only way she knows how.  I try to think of it like this:  if she is bothered by lights and the meltdown ceases when I turn them off, how would I feel if my normal lighting was 100 times brighter?  Eventually it would overload me and I would probably close my eyes with my face in the floor.   

Every sense can be impacted, even some you probably don't even know you have:

Visual

Does your child enjoy looking at lights?  Do visually stimulating books and toys capture their attention?  Did your child spend a lot of time staring at your Christmas tree?  If so, then your child is probably under-sensitive visually and seeks visual stimulation.  Other signs include staring at objects at weird angles (Alanna often stares at objects very close up or upside-down), wiggling hands in front of one's face, or short jerky head movements.  Alanna does all of these things.

On the other hand, if your child squints their eyes in normal light, enjoys dark rooms, avoids sunlight or becomes agitated with visual stimulation (think lots of lights and colours and movement), then they are potentially over-stimulated.  Alanna varies between the two - she is generally under-stimulated but can become over-simulated very easily.  Turning off the lights helps restore order.  Some days an exit sign can be very scary; other days it's funny and it's worth laughing at.

Sound

Most autistic children are under-stimulated by sounds.  They do not respond well initially to aural stimuli.  Most autistic children have to be taught to respond to their names or notice when a noise is occurring in their environment.  Alanna has slept through a smoke detector going off right outside her door for several minutes.  Not a peep.

On the other hand, some children may be sensitive to certain noises.  Alanna has always hated clanking cutlery.  She usually cries and puts her hands over her ears to tell us this noise bothers her.

Smell

The sense of smell is sense where we've been lucky.  Alanna seems to have a mostly normal sense.  Most odours don't bother her and yet she doesn't seek it out by smelling everything or smearing her feces on the wall to get a good whiff.

Taste

Many autistic children are picky eaters.  Alanna is over-stimulated and is very sensitive to many foods, including any vegetables because they tend to be bitter.  Other children may be under-sensitive and mouth or lick inedible objects or eat dirt (pica) to stimulate their sense of taste.

Touch

Alanna craves touch.  She loves deep pressure and seeks it out by rubbing her body with objects one would normally find uncomfortable. She also loves enclosed spaces (such as between furniture and the wall) because it simulates her sense of touch.

On the other hand, she is very sensitive to certain textures which does not help her picky eating.  Many other autistic children are over-sensitive to touch and resist hugs, affection and being touched in any way.  Such children also tend to hate clothing and have to learn how to wear clothes without being bothered by the sensation.

Movement

Children who are under-stimulated by movement crave it.  They'll run around all over the place, enjoy bouncing, jumping, climbing.  Alanna's sense of movement is very under-stimulated.  I could put her on a roller coaster that would scare me and she would probably enjoy it.  She loves vestibular games like "airplane".

Over-stimulated children may not like fast movement.  They may be afraid of escalators and dislike vestibular games where their bodies are moving around quickly.

Proprioceptive

This sense is an odd one because most people don't think about it, but it's really important.  It essentially tells us where our body is in space.  Without it, we have difficulty with balance and motor planning.  As is typical with many autistic children Alanna is clumsy and struggles with complex motor movements.  Motor planning is the ability to plan and carry out a skilled, non-habitual motor act in the correct sequence from beginning to end. Incoming sensory stimuli must be correctly organized to result in an appropriate, coordinated motor response. The ability to motor plan is a learned ability which can be generalized to all unfamiliar tasks so that the child does not need to consciously figure out each new task he faces. A child with motor planning problems may be slow in carrying out verbal instructions and often appears clumsy in new tasks.

How do you deal with sensory issues as a parent?  I'll get back to you on this one.  We are engaging with an Occupational Therapist for help here, but unfortunately their are no private therapists in this region (public therapists come with - you guessed it - waiting lists) and we have to commute to find this help.  Our therapist is at Blue Balloon in Burlington.

Our latest issue is the bath.  For several weeks Alanna will love her bath, and then hate it for several weeks.  We're in a hate period.  She has a complete meltdown in the bath, but it's not optional so we endure it.  I suspect it has to do with the feeling of water on her skin but I'm not sure.  She knows the word "bath" and will start crying if you tell her it's time for one, then look at the water pouring into the tub and run out screaming like you're about to give her a root canal without anesthetic.  It's heart wrenching.  But she needs to be clean.