Facing Autism in France

Today is Autism Awareness Day. I just read this article through the BBC website re:autism treatment (or the complete lack of) in France. This is absolutely crazy!!

Here is the link: http://www.bbc.co.uk/news/magazine-17583123

It appears that medical establishment in France are still stuck on Freud and his theories. This is soooo unbelievable! You would think that a developed and educated country, such as France, would have their act together. Talk about being in complete denial....let's just sweep it all under the carpet because Freud said so! My heart always goes out to the kids are their families. All this is so unfair to them and their current needs.

The examples in the article shared remind me of some of the questions that parents brought up during my workshops in India in February, 2011. Questions such as "does my child have autism because the mom is a software engineer and worked on her computer during pregnancy?". Refrigerator mom theories and beliefs still exist in India and around the world. In the process of denial and acceptance of this heart-breaking diagnosis, parents are trying to answer the question "why me?", "why us?". I understand when these questions are asked by parents, as they are trying to come to terms with their child's diagnosis.

It certainly does not help, if professionals (who are supposed to be the experts) ask questions such as "was this a wanted pregnancy?", "what kind of dreams did you have during pregnancy?". Really?? Let's blame the parents.....because they don't feel devastated enough! Let's recommend family psychotherapy...because that is what Freud would have done some 200 years ago!

Yes, shame on you France! Shame on you!!

Do Late-Talkers need Speech Therapy?

This question has been asked directly to me by friends, neighbors, co-workers several times. In fact, just this past week, 2 neighbors brought this up (one neighbor was a mom I had met 5 minutes ago!). The question usually sounds like this:
My son is 2.5 years old. He understands everything we say to him, he is very smart, very active. He loves playing with other children. He is persistent about getting his needs met. But, he is hardly talking. He can say "mama" and "dada", and "mo" for 'more' and a couple other words. I see other children his age talking in sentences and I wonder if I should be worried. My mother-in-law compares him to my niece who is about the same age and talking up a storm. Should I take my son for speech therapy? My husband thinks I'm crazy for worrying".

There is much research out there related to this particular topic. First, late talkers have to be differentiated from speech and language disorders such as apraxia and autism. While this might be difficult for a parent or even pediatrician to differentiate, a speech-language pathologist has the skills to do so very reliably within a single evaluation. Things to look for would include the child's ability to comprehend, ability to follow directions, ability to initiate, intent to communicate, ability to communicate in a variety of ways (request, comment, clarify etc.), stimulability of early developing sounds such as 'b', 'd', 'm','n' 'p', 't', 'h'; the ability to point (a VERY important skill), waving 'hi' and 'bye', clapping etc.

Research indicates that most late-talkers that belong to supportive and nurturing families, will eventually catch up.  While the 'wait and watch' approach and 'they'll outgrown it' does work for many children, it does not for all of them. Conflicting research says that late-talkers might be at a greater risk of language delays and later reading and spelling delays in elementary school.

So the first benefit of taking your child to a speech-language pathologist is to ease a parent's mind. But there is one thing to consider before you visit a speech therapist. A hearing test! While most babies get a hearing test as newborns, a lot can change within a short period of time. Sometimes children have mild-moderate hearing loss due to intermittent ear infections. Make sure hearing is not an issue.

Another benefit is knowing if there need to be any follow-up therapy sessions. If your child is, in fact, just a later-talker and all else is good, do they still need speech therapy? Many parents would say 'yes, I would prefer therapy to help them get started'. This is a common practice- to stimulate and encourage language within structured and predictable routines. The speech therapist can also suggest simple everyday activities to stimulate speech and language at home and in the community. Here is a list of just a few simple ideas to get you started:

• 1. Name Walk: walk around the house or playground. Name and touch things as you go, encouraging the child to repeat the words or to take the initiative in naming.
• 2. Photo Album:  make a photo album for the child with clear simple pictures of family members, pets, or the child engaged in familiar activities such as eating, sleeping, reading a book, or playing with a favorite toy.
• 3. Circle Rhymes:  Movement rhymes are fun to learn and perform. Favorites are “The Wheels on the Bus” and “Hokey Pokey.”
• 4. Words, Words, Words: The more words you use with young children, the more they will have an opportunity to learn. Talk about what you are doing when your child is watching you. “Oh, some milk spilled.” Point out the things you see or notice: “I hear an airplane. It makes a loud noise.” Be sure to use descriptive words and phrases as well as nouns and verbs.
• 5. Go Fetch: All kids love to be helpful. Take advantage of their new ability to move around and follow simple directions by asking them to get something for you. At first, make sure the item is visible. As their receptive language improves, they will be able to get things from familiar places even if they cannot see them.
• 6. Texture Fun: Give young children lots of opportunities to fell different textures, such as fur, cotton, corduroy, sandpaper, silk, stone, denim, and dough. Teach words like soft, hard, rough, smooth, sticky, damp, wet, dry, squishy, and bumpy as the child strokes the materials.
• 7. What’s Coming Up: Use words to prepare toddlers for transitions. “Play time is almost over. Daddy will be here after snack.”

So, in the end. DO talk to your pediatrician and discuss your concerns and evaluate options. DON'T dismiss any concerns that you have! YOU know your child best.

Social Skills

I've found some great resources on Social Skills that would be good to share. A psychology collegue introduced me all these resources. She has run social skills groups with kids with high-functioning autism in the past.

Perhaps my favorite resource is a book titled "The Social Skills Picture Book" by Jed Baker. It is available on the author's website, but is actually cheaper to buy on Amazon. I think it is a a great resource for teaching play, emotion and communication skills to children with autism. The book has a step-by-step breakdown for teaching each social skill....from 'greeting' to 'listening during a conversation' to 'compromising during play' to 'keeping calm'.
**Side note- Jed Baker also has a version for older students- 'Social Skills Picture Book for High School and Beyond'.

The book has wonderful photographs to go with each target skill set. I think this would be the biggest plus to purchasing this book- the visuals are large and clear; and there is only 1-2 photos per page (not making it too busy). 

There are also photos differentiating the 'Wrong way' of dealing with a situation , and the 'Right way'.  This has proved to be very helpful for the children I've used this book with.

Another reason why the visuals are so great are the talking bubbles and thought bubbles on the photos. It states everything that the child is wondering/thinking or saying, leaving nothing to guesswork. This is what our kids need! They need every part of the conversation spelled out for them. This is how they learn best.

During one of our peer play groups, we have introduced a social skills each week, reviewed the book, role-played the scenario. Then to make it even more personal, we took pictures of the 2 participants and created social stories that mirrored the ones in the Jed Baker book (except that it now had our actual kids in them).

Max has a friend!!

For those of you who know someone with Aspergers/Autism, you know that one of the biggest challenges for them is to make friends. These kids are just as sensitive, loving and emotional as a typical school-going child, yet they view and say things differently. They have a difficult time 'reading' non-verbal communication, such as body language, facial expressions, as well as comprehend figurative language. They take everything at 'face value' and follow all the rules. Yet, they do not understand why even when they are good at playing basketball, they are the last ones to be picked by their classmates to be on a team.

Parenthood is a show on TV that I've been following since it started over a year ago. One of my favorite characters on this show is a little boy named Max. Max is a wonderful child who loves insects and playing video games. Once he starts an activity, he has to finish it. He cannot stop in between, no matter what. He  has to follow his routine/plan. Sound familiar? He follows all the rules, but does not understand why grown-ups 'bend' the rules at times. He is this bright and lovable boy. Yet, he is constantly rejected by friends at school. He sits alone during lunch-time and is picked last on basketball teams. Last week, Max made a friend. He had a friend come over to him house for the very first time. EVER. It was so touching and I can only imagine what the parents were feeling.

Now I know this is a television show and not real-life, but because I know of so many families in similar situations, it felt very real and personal.

It's such a simple human need- to have a friend, to fit-in, to feel connected with someone. But it is SO complex with all our human emotions and personalities. Yayyy for Max!! Double yayyy for his parents Christina and Adam...it's been a tough, tough road for them as well.

New and Exciting Technology:Use of iPads for therapy

It's been a busy few months and I haven't had a chance to update this blog. Lately, I've been working on setting up iTunes at work and using apps with several students. Almost all reaction by students has been positive. They are highly engaged with the touch screen, recording their voice and listening to the play back. This is VERy exciting, because for a lot of the students I work with, the biggest challenge is finding things that motivate them.

If you haven't seen this telecast of 60 minutes that first aired in October 2011 about Apps for Autism, click here:
http://www.cbsnews.com/video/watch/?id=7385686n

The biggest contribution of Steve Jobs and Apple really has been the marketing of the iPad. The iPad, in all it's glory, has drawn so many parents of children with special needs and popularized voice-output devices. The truth is that there are several such devices that have existed in the market for many, many years. They never gained the popularity that Apple devices have, in fact, most of the world does not even know that they exist.

Days after this was broadcast, I was flooded with questions from co-workers about if I had seen the show and what I thought about it. I think the show was a great summary about the possibilities of what an iPad, or can do for kids with ASD. Here are a few important facts I'd like to point to:

1. The iPad is not the only tablet avaialable in the marlet. There are several touch screen options. Although, the Apple offers the largest and most diverse apps.
2. What makes this whole experience exciting is not the iPad alone, but also the apps. The credit goes not just to Apple for creating the iPad, iPod Touch; but to app creators who have created these wonderful apps. Some of them are simple ideas, but can be life-changing for a child with a developmental disability and their parents.
3. Proloquo2Go is only one of the many apps that can be used for communication. It might NOT be a good fit for every child with autism, but other apps could be.
4. iPads/ other tablets can be useful for not just children with autism, but for any child, with or without disability. I have used an iPod Touch with students with autism, Aspergers, developmental delays and language disorders. I feel that they can all benefit from it in different ways.

The autism parents community was, as expected, greatly affected and influenced by the show. After a patient's extended family saw the 60 minutes clip, they were convinced that an iPad is just what he needed and pitched-in to buy him one. Will an iPad solve all these little boy's problems? No, but it might be something positive in his day and a motivating way to learn for him. Will it interfere with his sensory need to look at lights and will he be constantly flicking screens? Only time will tell.

I am personally very excited about the possibilities. When a child who "just wants to do nothing" and is motivated by "nothing" is motivated by the iPad, that is what we'll use to get to him :) 

Better Responses through Sensory Strategies

How much sensory input is too much? The answer really depends on the child you are working with.

As adults, we all have our individual tolerance levels towards sensory input. Think of how some of us are bothered by loud music, certain smells, deep pressure touch etc., while others are not. Some of us don't like the feel of paint or dirt on our hands, some of us don't like certain food textures or tastes. Similarly, children with special needs can have heightened or hyper-sensitive sensory systems.

Some children seek sensory input and might now know how to seek it appropriately. These children  might be described as "constantly on the run", "cannot sit still" or "crashing into everything". Educators/caregivers can shape these behaviors into more socially acceptable behaviors. Sensory breaks work wonders. Allow the child to jump on a trampoline and swing on a swing for a few minutes, and this will lead to a calm and "ready learning stage". If the child is seeking sensory input orally (chewing pencils, shirt sleeve etc.), they can be given a chewy tube to chew on instead.

On the other hand, some children find it too difficult to manage all the sensory input they receive on a daily basis. They cannot stand bright lights, loud noises or too much visual stimulation. The everyday world seems too chaotic and disorganizing to them. These are children who stand in the middle of the school hallway and shut their ears, or cannot deal with being a part of a large crowd.

Below are some strategies for better responses while providing sensory input. A big thank-you to Lorrie Massa, a wonderful OT that I work with. She has truly amazing ideas and has transformed the lives of so many kids.

1. Brain function influences behavior, and behavior influences brain function. Abnormal behavior reinforces abnormal brain function.
2. Make interactions fun, for the person and you. Make yourself the source of pleasurable sensation.
3. Input to self is easier to accept than input through an object. Input by another person is hardest to accept.
4. Person must be calm and alert before being able to orient for the purpose of learning.
5. Input to one system affects the other systems as well.
6. Everything you do influences the neurons, neurochemistry and neural circuitry. Input should be given similarly to both sides of body.
7. Getting the person to do something active, like initiating or finishing an action, will get best results. Hand-over-hand usually does little but "walk a body part" through an action.
8. It's crucial to have the person participate in functional activity whenever the person is settled and able to generate an organized response. Functional activity is something the person needs to do or else someone else has to do it for the person.
9. Maintain your own arousal at an appropriate level.
10. Be alert to ANS responses, (change in facial color, sweating/clamminess, nausea/vomiting, increased/decreased respiration, drowsy or sleepy) especially those that signal trouble.
11. Let person be actively involved, give input to self, stay with input if it's helping. Give choices: ask "more?"
12. Frequent doses of input acquired as part of natural routine gets beat results. Give input where individual is not in isolated treatment environments.
13. Reinforce total communication, i.e., using everything: sign, pictures, symbols and line drawings, verbally stating words, pointing to written words, augmentative communication.
14. Adjust what you are doing anytime the person withdraws. You want the person’s nervous system to have only the most positive experience possible with you.
15. Giggling, being too emotional, grimacing, not "listening" to input, avoidance responses, over arousal, being too relaxed all these indicate you should adjust or try another strategy.
16. Take advantage of good days. That is the time to emphasize functional activity. And that is the time to help the person learn how to give him/herself helpful sensory input.
17. You can make some things happen on your own, but you can make a lot more happen faster when others support your effort. If you have limited time with a person with severe sensory needs you’ll get more accomplished if you help the person's care providers to better understand the needs and how to meet them.
18. When in doubt - don't.

Adapted by Lorrie Massa, OTR/L
From B. Hanschu, 1997

Repetitive Behaviors can be Sensory Seeking Behaviors

Very often children with Autism Spectrum Disorders (ASD) demonstrate repetitive behaviors. To the regular person, repetitive behaviors (such as hand flapping, chewing on shirt sleeve, toe walking, jumping, licking desks  etc.) might appear to be obsessive in nature. But my experience of co-treating with some wonderful Occupational therapists (OTs) has taught me, that many of these rote behaviors actually alleviate their difficulties with sensory regulation.

The brain processes information provided by the sensory systems: touch, kinesthetic, spatial awareness, sight, sound, smell, and the pull of gravity. Sensory integration refers to the manner in which the brain processes, organizes, and interprets information coming from the sensory system. Processing sensory information provides a critical foundation for later, more complex learning and behavior.

In most typically developing children, sensory processing develops during ordinary childhood activities; however, students with ASD often have a variety of sensory impairments. Typical sensory integration deficits include difficulty coordinating gross and fine motor movements, locating their bodies in space, and regulating the level of sensory input. Sensory processing problems negatively impact academic learning, social skills, behavior, and self-esteem.

Students with ASD may exhibit deficits in sensory processing in some or all of these areas:

• Sensitivity or insensitivity to sensory information

• Attention and focus

• Regulation of activity level

• Transitions between activities

• Control of impulses, behavior, and/or fear in dangerous situations

• Fine or gross motor skills, motor planning, or coordination

• Oral motor—may put objects in his/her mouth or may not be able to use a straw

• Recognition of personal space—respecting others’ personal space and/or escalated reaction to purposeful or accidental invasions of their personal space

Movement Activities that Promote Task Engagement and Focus

• Provide opportunities for rhythmic, sustained movement (jumping on a jogging trampoline, marching, or bouncing on a ball) to organize the nervous system.

• Suggest a 5 minute sensory task (swinging or rocking at recess) before seat work.

• Encourage students to hang by their arms on the monkey bars.

• Identify tasks that provide additional opportunities for movement—erasing the blackboard, washing desks, taking and/or retrieving messages.

• Provide a rocking chair in the classroom.

• Use timers for specific tasks to help with timely task completion.