How to select a Speech Language Pathologist

For most children with autism, a Speech and Language Pathologist (SLP) is a must.  In many cases, an SLP is who a child will see first when they present with language delays or problems with social communication.  But like all professions, there are good SLPs and bad ones, and SLPs better suited to work with different populations than others.

Since A was diagnosed, we have seen (between both children) at least eight SLPs.  Of those eight, two were truly helpful, and two tried really hard.  The other three, not so much.  One we considered was so hostile to behaviour therapy she told us flat out she would not work with any family that used it.

So, beyond the obvious statement, make sure your SLP is validly registered in your jurisdiction (in Ontario, the College of Audiologists and Speech Language Pathologists, or in the rest of Canada, the Canadian Association of Audiologists and Speech and Language Pathologists).

Here are the other important considerations:

1.  Are they willing to work within an interdisciplinary team?

Most families treat autism with a variety of professionals, especially behaviour analysts and occupational therapists, but also potentially naturopathic doctors, music therapists, or others.  One SLP we worked with was convinced Floor Time was the bomb, and she would consider nothing else.  If any SLP is preaching one way as the only way, run away.  A good SLP will work with anyone you want, even if they are skeptical of the treatment approach.

2.  Do they understand your child's needs and cognitive ability?

First, a lot of children with classic autism have some degree of cognitive impairment.  This is not true of children with PDD-NOS or Asperger Syndrome.  Understanding a child's developmental level is crucial to understanding how to bring them along by using developmentally appropriate (not age appropriate) activities.

Second, many SLPs have a very top-down orientation.  That is to say, they want to teach understanding, and then use that understanding to shape a child's behaviour, or what they will do having that understanding.  As humans age, this is the proper way to teach - we have some understanding (even as very young children), so we act accordingly.

However, some children with autism, particular very young ones, or more severe ones, do not possess enough cognitive ability to understand.  So we have to switch to a bottom-up approach, and this is where we use the principles of behaviourism or ABA.  When you use this approach, a child doesn't need to understand why they are doing something, only to act in a certain way given a recognizable circumstance.  The "why" is never taught, which is a key problem in generalization - to truly generalize something, you need to know why you are doing it, because you can never truly memorize all of the circumstances.  You can approximate, but you'll never quite get all the way there.

Many SLPs have a tough time switching from top-down to bottom-up unless they work with a lot of children with severe autism.  

In terms of needs, any good SLP will begin with an assessment to get a sense of where they are starting, and then develop goals to know where they are going.  The goals should be SMART - specific, measurable, attainable, relevant and time-bound.  Most SLPs can do the specific, measurable and relevant part, but they miss attainable and time-bound.  A good SLP will modify goals after time to ensure therapy money is not being wasted.

Last year, we spent thousands of dollars (intensive 2 hours a week therapy) working with our current SLP to use a technique called PROMPT to get A to speak.  While this did increase A's sounds tremendously, she still could not form words consistently, and words she acquired she later lost or could not use consistently later.  When I asked this SLP about goals, she agreed that for the present time continuing to work on some single words was appropriate, but A's daily communication could best be met through Augmentative Communication.

3.  Do they have any experience working with verbal children with autism?

If your child is verbal, you need to know the answer to this question.  Typically developing children with language delays are very socially motivated.  SLPs with no experience with autism find it very challenging to engage children with autism when they have no practice doing so.  If they cannot describe how they work with such children, walk away.

The Hanen program "More Than Words" is particularly useful for verbal children with autism and most SLPs in Canada have this training.  If they do, it is a good sign.

4.  Do they have any experience working with non-verbal children with autism and AAC?

When A was 16 months we took her to see a very young SLP.  This woman was completely lost because at the time, A was totally unreachable.  Social interactions were rare, crying was the norm for requests.  Clearly, she was out of her element.  We did not stay with her very long.

When A was older, we worked with another SLP, and this one was very experienced.  However, she was completely untrained in the Picture Exchange Communication System (PECS), which has a very specific protocol for teaching using behaviour techniques.  At the time A was at phase IV - requesting with two pictures.  This SLP was signing to A using total communication as well as prompting her to use 4-5 pictures on a sentence strip.  A was simply overwhelmed at all of these new techniques.  Sign was too abstract, and there were too many pictures and they represented some abstract concepts (especially adjectives) she had not yet learned.  Clearly, this SLP did not have experience in the AAC we were using.

Because most children with autism develop speech, it is very hard to find good SLPs who know what to do with AAC devices, sign language or PECS.  For most children, AAC is a stop along the way to speech, but for some, like A, it is where they will stay.  

5.  Is this a person with whom you feel comfortable?

In the end, you will be spending a lot of time and money with your SLP.  Even if it's not your money, it is time you will not get again, so make sure you don't waste it.  The rapport the SLP has with you and your child is crucial to success.

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. 

 

Emergently Vocal

To a parent with a child who has autism, the beginning of speech seems a lot like this - the mythical Phoenix rising from the ashes of past dreams.  We have spent a lot of time and money having Alanna work with a speech-language pathologist, with follow-up from her IBI team to get her to speak.  She has speech apraxia, so despite her best attempts to imitate vocally (despite effort, intention and desire), she cannot make many sounds without a lot of help.  It is incredibly frustrating for her.  I am convinced without this additional impediment she would be very vocal (perhaps not communicating functionally, but have no trouble with vocal imitation).

We have been using PROMPT, a technique that gives Alanna some physical cues about lip, jaw and tongue placement to make sounds.  Once she has a sound, she also has difficulty isolating it and combining it with new sounds to make words.  For example, trying to get her to imitate \o\ (as in go) can be tough because she learned this sound as go, and so the "g" has to be in front to get to the "o", and if you want to combine "o" with something else, we have to get her to drop the "g".

However, she is now "emergently" verbal.  We have several words that are consistent and have meaning:

• Go
• More
• Up
• Help
• Open

And we have a word list of perhaps 26 words she can sometimes say, but needs physical prompting or she is inconsistent or we can't understand the speech production.

Of course all of this is very expensive but it is also worth it.  Every word she can say is like gold because it makes it easier for her to communicate and be understood.

Communication Update

I think if Alanna had the "talk" picture in her communication book she would probably give me these two pictures on a sentence strip.

Alanna has made some good progress these last few months.  She is in regular speech therapy with a talented speech-language pathologist (SLP) and she works directly with Alanna's IBI team to ensure the therapists are incorporating her techniques.  This seems to confirm our previous suspicion of a motor planning disorder (speech apraxia).  She can say roughly ten words, mostly prompted, but sometimes spontaneously.  This in itself is a miracle, since we were at zero words before, and any words is a step in the right direction!  The SLP has said that once she can say 50 words, her learning may accelerate because in typical development this is when children get the base to practice enough sounds to learn new words more easily.

Interestingly, although ABA has proven very effective to teach Alanna most things, it was less effective for vocal imitation.  Many early vocal programs encourage children to echo sounds, and then these sounds are built up to form words.  This has never really worked with Alanna because the sounds (phonemes) were meaningless.  Once she attached the words to meaning, she was much more successful.  However, now that she has words, we can use ABA principles to get her to use them appropriately.  And her PECS language has been taught successfully using ABA principles.

While we're on the subject of PECS, we are starting to see a spike in some behaviours.  I suspect this is because as she is getting older (she is 3 1/2 now, where does the time go?) she is realizing that not everything she wants to say is in her communication book.  She has, several times, gone to her book and looked at the pictures and then became very frustrated because she could not express want she wanted to say.  Once she started a sentence with "Alanna..." and then couldn't find the words to finish.  We are bringing in more complex requesting programs to try to reduce frustration, but I really think her cognitive ability has exceeded her expressive language so much that this will continue to be a huge issue for her.  Thankfully she has started using the sentence "I want outside" to mean either (1) I want to go outside and play, or (2) I want to leave now.  I am really trying to understand the root of her communication because I think half the time what we think is a "simple" request is simply the best she can do.  For example, "I want blanket" (her comfort object) might be, "I am afraid", but she has no pictures to say that yet.  She feels it, perhaps she can label it given the pictures but you can only teach so much at once!

I believe she is very much aware of her inability to speak and she is very frustrated by this fact.  She tries very, very hard in speech sessions to make words, and even tries to prompt her own mouth to make sounds.  On the one hand, it's a good sign that cognitively she is understanding more of her world.  On the other hand, she is also lacking the ability to express herself, and that is incredibly difficult for her to deal with.

I expect more behaviours as she tries to communicate.  But I don't believe this is "bad" - I think it's evidence of something good.  We just have to try to find ways to help her tell us what she is thinking and feeling.

Vocalization Frustration Part II

Back in August, I blogged about my frustration with attempting to get Alanna to speak (and when I say my frustration, I imagine hers is even worse).  We were pumped about seeing our new speech-language pathologist.  The good news is, she is truly excellent, probably the best speech-language pathologist we have ever seen.

Did PROMPT work?  Yes, it did work.  She was able to get Alanna to learn new words, like "on", "open", "ball", "more".  Alanna was paying attention, clearly motivated, clearly understanding speech was expected, but she just couldn't get her mouth to move in the right way to make the right sounds.  After hours of therapy we did get her mouth to move in the right way, but she had difficulty switching (say from an open mouth for open to a closed mouth for more).  Open and on were good, ball was coming, bubbles had a good approximation, but "more" was "open" and then "buh".  Working on "more" turned everything into "mama".  So it appears we are back to the beginning again.

Alanna's recurrent pattern is always to get to five or six words and then as new words are learned, she loses the ability to say the words she knew before because she seemingly no longer can make the sound properly.

What's the verdict?  The speech-language pathologist has told me that the inability to make proper sounds and switch between sounds is typical of speech apraxia, but that "losing" words once learned is not.  Regression is more typical of autism, but usually if there is a regression it is more global and not specific to one area, due to seizures or major life changes.

We will try for several more weeks to see if this pattern continues.  If so, then we will discontinue speech therapy because it is expensive and is not breaking the cycle.

I used to have great hope Alanna would be able to use speech as a primary form of communication, but as time passes, I have to admit that I am less hopeful.  It breaks my heart.

PECS and Sign

For children with autism who are non or pre-verbal, there are two common alternative systems:  The Picture Exchange Communication System (PECS) and sign language.  By far, PECS is more popular.  It is easier for adults to understand, and also, as a selection-based communication method, is easier to teach children how to use.

Alanna is currently in "Phase VI" of PECS - the final stage - where she is learning to label and comment.  For example, she might choose two pictures, one "That is" and one "ball" and put it together on a sentence strip to say "That is a ball".

We are very grateful for PECS because it is the system Alanna uses functionally.  She has some words, and is learning some sign, but most of her communication is via PECS.

Having said this - there are problems with PECS.  Although PECS brings language out in some children, it does not seem to be doing so with Alanna.  Her imitation skills are finally getting to the point where she is able to imitate signs closely enough to make them useful.  So we are teaching sign as well.  One of the nice things about sign (other than the fact that we think it is bringing out more speech for her) is that it is more natural in conversation.  She can face me and sign and I can sign back and pair it with words.  Pausing to wait for her to find a series of pictures in a book and give it to me make the conversation much slower.

So, here's my take on the whole PECS versus sign debate... most kids need PECS to start because their imitation sucks (a hallmark deficit of autism), and because most people do not understand sign language.  However, signing with family is great if it can be taught because it makes conversation more natural.  It's also good in a pinch if you lose a picture or forget the whole communication book (I have turned around many times in the car because I forgot Alanna's communication book or we lost a key picture).  I'll be interested to see if it brings out more language for Alanna.  So far, so good.  We've been teaching her book and ball, and lo and behold, I've heard both words out of her lately!

As for being able to talk - we want this so much for Alanna, but we think she suffers from apraxia of speech, which makes it so hard for her to talk.  Hopefully, with some speech therapy, she can get more consistent with making sounds.  More on this in another post!

Augmentative and Alternative Communication

If you are a parent of a non-verbal child on the spectrum, you will have agonized over this topic.  These children need a way to communicate and in particular to communicate their needs.  Without a functional communication system, the child will use other means of communication, like leading an adult to what they want, or crying, screaming, and self-abuse.

The most common system introduced to children is the Picture Exchange Communication System (PECS).  The goal of this system is to make a child an initiator (not just a responder) of communication and to understand its usefulness through exchange of pictures for desired items.  Later, children can make comments and have simple communication exchanges with PECS.  This is the system Alanna uses.  There are six phases of PECS; Alanna has remained in phase three for months.  Currently she is able to go to her communication book, choose what she wants (or choose something representing a label if we ask her what something is) and bring it to us.  If it is a request she does it spontaneously without help and she brings it because she is internally motivated to get something.  We have not gone to phase IV because that phase introduces sentence structure, and we had, to this point, been making good progress on speech.  The concern from our psychologist was that Alanna could just start saying "I want" instead of the actual items, which she was at that point.  However, her vocals have really decreased.  Hours of mand training for good clear approximations are now met with silence or throaty "guh guh" sounds.  So now the question... continue with mand training with this much intensity or dial it back and introduce more complex PECS to allow Alanna to speak in sentences and comment?

Verbal behaviourists like Dr. Mark Sundburg, Dr. James Partington, or Dr. Vince Carbone are fairly persistent in their view that non-verbal children should be taught sign language.  Don't get me wrong; we use a verbal behaviour type therapy approach.  However, sign language is not always suitable... Alanna, for example, has a lot of trouble with imitation in general.  She is improving, but her language acquisition is much faster with PECS.  There is also the problem of usability - most people are not going to understand sign, especially if they are approximations.  However, a sentence of pictures is clear to almost anyone.

There are problems with PECS, though.  Eventually she will have too many and we will have to switch to a voice system if she is not vocalizing or picking up some sign.  To me, PECS seems more functional for long term use, but sign language seems better for learning how to talk.  Obviously, we want her to talk!

Here's hoping for some clear direction...