Autism Can Be Identified Earlier, Which Means?

A couple of days ago, I posted this article (http://www.healthcanal.com/genetics-birth-defects/48756-autism-signs-can-be-identified-earlier-than-formerly-thought-study-suggests.html) on my Facebook wall and it has been bugging me ever since. We can identify autism early and then what?  Throw a bunch of services at a 2-year-old child and hope something sticks?  It seems like prioritization is necessary, but no one wants to prioritize.

If you go onto the CDC website (http://www.cdc.gov/ncbddd/autism/treatment.html), it states early intervention is important and references one article about preschool education (technically early intervention is before preschool) and another article with an educational committee’s recommendation. The committee recommendation document is over 300 pages long (http://www.nap.edu/catalog.php?record_id=10017) and the upshot is in this paragraph taken from the executive summary:

The committee recommends that educational services begin as soon as a child is suspected of having an autistic spectrum disorder. Those services should include a minimum of 25 hours a week, 12 months a year, in which the child is engaged in systematically planned, and developmentally appropriate educational activity toward identified objectives. What constitutes these hours, however, will vary according to a child’s chronological age, developmental level, specific strengths and weaknesses, and family needs.

So, do a bunch of therapy, throw the kitchen sink at a kid as young as possible, but we don’t really know which kids will respond and how well they will respond and what therapy is appropriate? And then there is line in the report:

Personnel preparation remains one of the weakest elements of effective programming for children with autistic spectrum disorders and their families.

Great, so throw a bunch of therapy at kids as young as possible, but chances are a good portion of your team will not be appropriately trained. It is enough to make a new autism parent want to cry.

My daughter Beth, who is now almost 6, was about 2.75 when she was diagnosed, and she had some OT (Occupational Therapy) and psychological support from 2.75 to 3, then started intensive therapy (ABA[Applied Behavioral Analysis], speech therapy, OT, and PT [Physical Therapy]) at age 3. Things did not go well in her early intervention and preschool program, so it is really hard to imagine that starting intensive therapy at age 2 with the same program would have made a world of difference. I will admit that from 2-2.5 she was still rather calm and had fewer stims and preoccupations. Maybe that is why it is best to start early, because you can teach more in that period and there will be a strong foundation for further work.  Given that consideration and what I know now about my child’s challenges, I would say that the following services at home would have been most helpful to Beth from age 2-3: 1. Play therapy like Floortime or a parent-oriented behavioral approach like the Denver Model, 2. A focus on body movement and motor planning, with an OT very knowledgable in treatment for dyspraxia, and 3. Language work (receptive and verbal) with a speech therapist using a Floortime approach.  But that is looking back and that is just what I think is right for my kid and our family. I have no idea what I would suggest to another parent who has a newly diagnosed 2-year-old child with autism. 

It would be great to have recommendations from an Autism Therapy Prioritization Committee* specifically geared towards 2-3 year olds, where they describe particular profiles of kids at that age who have autism and what therapies would most likely help. It would also be helpful if a prioritization committee would bite the bullet and chose which ABA programs and which developmental charts are best for 2-3 year olds diagnosed with autism. In addition, it would help to know which play-based models and certifications are recommended, so that parents can ask about those certifications when they are choosing therapists (many speech, OT, and ABA therapist hold these additional certifications). I doubt we will see this type of advice any time soon. And in the meantime, parents with young children who have been diagnosed with autism have the overwhelming task of deciding what therapies to do and which therapists to hire (or fight for through the school system). My heart aches for these parents and I believe the experts have a responsibility to prioritize and further clarify early intervention recommendations.

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*My name for my imaginary committee

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Never Say Never

I never thought I would be writing this. We are back to ABA (Applied Behavioral Analysis). Whoa. Wha? Me? The mom who said a hundred times “ABA just didn’t work for us”?  If you are anti-ABA try to read on. If you are pro-ABA stop pumping your fist already and read on 😉

For those who are new to the method, I attached a definition of ABA that I found on the BACB (behaviorist certification) site below.* As I understand it from my experience, ABA therapy for young kids basically means setting goals, measuring progress, and rewarding for doing work toward the goal. The reward can be anything (e.g., edible, play, iPad, sensory break). Generally, negative behaviors are ignored. I have never had much of an issue with the overall concept of ABA, but the devil is in the details of the ABA plan and the talent and experience of the ABA therapists. Being a top-notch ABA therapist to young children who need to work on verbal, academic, play, social, and fine/gross motor skills is a tall order. There can be hundred of goals to work on and they are all detailed in developmental maps (http://www.marksundberg.com/vb-mapp.htm , http://www.partingtonbehavioranalysts.com/page/ablls-r-25.htmlhttp://www.amazon.com/Denver-Curriculum-Checklist-Children-Autism/dp/1606236334/ref=pd_bxgy_b_img_z), but it is hard to determine how to prioritize goals, when a child is ready for goals, when a child has truly mastered a concept (without holes in logic and without forgetting what they have mastered later), and how to teach something to a child who may have a very different perspective of the world than his/her teacher. Also, a good ABA therapist will be skilled in relationship therapies like Floortime (http://www.stanleygreenspan.com/) and RDI (https://www.rdiconnect.com/pages/home.aspx), and will use a child’s interests to meet goals. It is not an easy job by any stretch of the imagination, which is probably why there are people, like me, who have had bad experiences.

ABA did not work out for us when Beth had intensive ABA therapy from 3 to 4 years old. I saw basically no progress with an increase in negative behaviors (aggression, sleeping issues, increased stress). The therapists were able to get Beth to be in a typical preschool classroom (With an ABA-trained aid who fed her squirts of glycerin on her hand, which she licked off as a reward for just being there. Glycerin? Long story there.). In the end it was clear Beth only cared about the reward and was not really tuning into the classroom. Occasionally when music was involved she seemed to have fun. So, we took a very long break from ABA and did Floortime and standard teaching methods at home. I wanted to see if Beth could do things without the edible rewards and if her language could progress with more natural methods like Floortime. Soon we added a speech therapist, because it was clear I could not do it alone and not with just Floortime. Over a year’s time with the Floortime approach, speech therapy, and standard teaching methods, Beth was really initiating with her body (by getting into everything around the house) and verbally (rapid requesting for things she wanted). But slowly, ABA sneaked back into the picture. And when I tried it this time, it worked better than before and I finally understood why people support ABA. When it comes to autism and therapies, never say never is my motto now.

Rewards for Work

To say that Beth and I struggled trying to do schoolwork in our homeschool is an understatement. It was tough to get her to work for a couple of minutes without rewards. Often she would get very upset before we could complete the task. With no other option, and despite my loathing of edible rewards, ABA made a comeback with me introducing rewards for schoolwork. I worked very hard to find a range of rewards, and over time we have a nice set of both edible and non-edible rewards (examples include peppermints, mint floss, blowing bubbles, iPad time, batting a balloon around, and a break in her room where she usually jumps on the bed). Why the need for such high reinforcement for just 5-10 min of school or language work? In short, it is incredibly difficult for her to focus on the task (due to competing sensory interests), coordinate her body and language, and sit still. I always thought if we got the work level right or made the task extremely fun it would not take an additional reward, but I tried everything and I still had to use the “additional” rewards.

The additional rewards worked, but Beth reached the point of rapid requesting for items and we had a new problem. She would bug me constantly for the reward because she finally had the words. My friend used a token board with her son and it worked wonders, so I decided to make one to space out her rewards and teach her to wait. I believe it works great for Beth because it gives her a sense of time and how long she needs to wait in a visual representation.

Token Board (front). I tell Beth  moves 1 penny into a small box after doing some work and after 4 pennies are earned (moved into the small boxes) she gets the reward in the large  box.

Token Board (front). Beth moves 1 penny into a small box after doing some work and after 4 pennies are earned (i.e. moved into the small boxes) she gets the reward in the large box. Velcro is used for attachment of rewards and coins (Side note: I rotate pennies, nickles, quarters, and dimes so that Beth is learning the coin names too).

Token Board (back). Reward choices are on the back of the board and after Beth chooses her reward, I move it to big box in the front of the board.

Token Board (back). Reward choices are on the back of the board and after Beth chooses her reward, I move it to big box on the front of the board.

I try to focus on the positive and be happy we are able to use rewards effectively now. But I can’t help but wonder what would have happened had a variety of rewards and a token board been used in Beth’s previous ABA program. She was so hyper-focused on the glycerin reward and her verbal requesting was so sparse it seems like an obvious missed opportunity. But maybe Beth just needed time to mature before she accepted other rewards and a token board. We’ll never know.

Flashcards & Developmental Maps

I can’t remember why, but about 4-5 months ago, Beth and I pulled out some simple I Spy books that she had when she was 2 (http://www.amazon.com/Spy-Little-Toys-Jean-Marzollo/dp/0545220963/ref=pd_sim_b_11?ie=UTF8&refRID=05MWP470F164HA9XWE4P). I remember she used to point at some items before autism really became evident at just before age 3, but she really couldn’t attend to the book or point to them at all when we tried it again recently. To make a long story short, after a visit to an ophthalmologist and a diagnosis of Oculomotor Apraxia (not the most severe kind, thank God), I became aware of how truly difficult visual scanning and discrimination is for Beth. The ophthalmologist told me she most likely will grow out of it, and to make things as easier on her as possible. He suggested a distraction free work space, picture books that were not too busy, and a book holder for reading (http://www.amazon.com/Portable-Reading-Document-Holder-adjustable/dp/B005IV6U0U/ref=sr_1_1?s=office-products&ie=UTF8&qid=1395155629&sr=1-1).  I also have Beth use a slant board for writing and doing activities, because scanning a flat surface is more challenging than on the slant board.

In addition to the visual issues,  I realized Beth had a terrible time initiating pointing. For awhile I had to nudge her elbow and rest her hand on the table in front of the I Spy book, and occasionally had to sweep my hand across the book to get her attention and help her to point. Over time she is doing much better with pointing to things in books. I remember we had great difficulty in the previous ABA program with pointing to flashcards. She used to pick up the cards or brush her hand across them instead of pointing. I suspected then that she was actually getting some of them wrong when she knew the answers. Now that we worked through her motor issues with pointing I can say that was definitely the case. No wonder she was frustrated.

The experience with the I Spy books got me thinking that maybe the ABA flashcards I thought she hated were not such a bad idea after all. I had asked the ABA therapists why flashcards were necessary for her sessions but I did not get a good answer. Now I know if you get the right flashcards, they can be very useful, especially for kids with visual scanning and discrimination problems (the flashcards should not be so big that it requires a lot of scanning, not so small that it is hard to discriminate the picture, and a white background is best….unfortunately we did not have the right flashcards in the previous ABA program). Put simply, flashcards are visually easier to scan to find the answer to a question. Also, flashcards give a visual grid of choices when you are working on language goals, which if the scanning issues have been addressed, reduces frustration.

So, I stopped thinking of flashcards as the enemy and went back to our old developmental map from her previous ABA Program, the VB-Mapp (http://www.amazon.com/VB-MAPP-Behavior-Milestones-Assessment-Placement/dp/0981835627/ref=sr_1_1?s=books&ie=UTF8&qid=1395157949&sr=1-1&keywords=vb+mapp). With the help of Beth’s speech therapist and the VB-Mapp to set goals, we did a lot of receptive work (pointing to answers) and expressive language work with flashcards and Beth has gained a lot of skills.

I definitely have a lot of issues with the VB-Mapp and I would suggest ignoring the first list entirely and going with the second more detailed list. For some reason some of the secondary tasks on the second list within the book don’t quite align with the main goals they are associated with, and yet the secondary goals are very important for children like Beth who need every step taught. My biggest beef with the VB-Mapp is a part that states that children should respond in a certain amount of time (it is called fluency). Or else, what?  The therapists gave her the answers, that is what (errorless learning is what the therapists called it). I think the theory goes that we should give answers to reduce frustration, and some therapists say that the children are just in a habit of not answering and they need to answer faster. This frustrated Beth to no end. I know she had something in her head that wanted to come out, but she just couldn’t get it out when she was 3. I argued with the therapists to give her more time (because she often did answer if given enough time) and we struck some sort of compromise. But her “amount of time to answer” and her ability to answer at all was very inconsistent back then. Now she can answer fast, and all I can say is that over time, her processing of language and ability to speak an answer has gotten faster without ABA.

When we stopped ABA the first time, we gave Beth a lot of choices, asked her what she wanted and what she saw, and worked on receptive directions tirelessly. We worked with a great speech therapist who is very good at Floortime. One day we noticed Beth’s receptive language was way up, later we noticed she was singing, then later more spoken words started coming out. Then we tried ABA again and it seems to work. So, maybe she just wasn’t ready to speak when we did ABA from 3-4 and now she is (?)  Which is the frustrating thing about ABA. You have the map, you have the method, but you have no idea how to prioritize or teach each individual kid. And you definitely have problems deciding when a kid is ready to attack a goal. Like I said. Being an ABA therapist is a tough job.

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Definition of Behavioral Analysis (taken from http://www.bacb.com/index.php?page=2): “Briefly, professionals in applied behavior analysis engage in the specific and comprehensive use of principles of learning, including operant and respondent conditioning, in order to address behavioral needs of widely varying individuals in diverse settings. Examples of these applications include: building the skills and achievements of children in school settings; enhancing the development, abilities, and choices of children and adults with different kinds of disabilities; and augmenting the performance and satisfaction of employees in organizations and businesses.”

A Note to Myself 3 Years Ago

Dear Self 3 Years Ago,

You just received Beth’s autism diagnosis and quit work to stay home with her. I know you are depressed and anxious about your little girl’s future. And to be honest, life as you know it will never be the same and things are going to get a whole lot worse before they get better. I don’t envy the road you will walk over the next 3 years, but you will come out the other side a better parent and a stronger and more compassionate person. You will let go the “shoulds” and “what ifs” and finally learn what true acceptance means. To help you on this difficult journey and to ease the path a bit, I have a few tips for you below.

You’re Welcome,

Yourself in 3 Years

  1. What Autism is NOT is Very Important. Contrary to what many believe, these things are not part of the autism diagnosis definition, and in many ways they are more important for understanding Beth and how to help her: low tone, dyspraxia, motor planning impairment, ADHD, anxiety, sensory processing disorder, and visual scanning/discrimination impairment. Look these terms up and study them at length. Several therapists will tell you Beth’s “autistic behaviors” must be ignored or controlled through bribery and they will not look deeper to the core issues. Do your homework and don’t accept that there is no reason for behaviors that get in the way of Beth’s functioning. She is trying to tell you something.
  2. Embrace your sensory kid. Careful observation and supportive parenting will take you a very long way with this sensory kid. It is not about a sensory diet, it is about a sensory lifestyle! Beth experiences her world by her senses in a very unique way, and she seeks out and avoids certain senses. It may help to think of her as still in the exploratory developmental phase in many ways. But don’t underestimate her, because her sensory seeking and avoidance will change often and mature with time. It is also hard for her to use all her senses at once and integration will come slowly, but it will come! 

    Eating Snow

    Eating Snow (Take my advice and just give her a spoon, because this will be the dominant snow activity for a long time.)

  3. Just Do Something. You don’t know where to start and you are afraid to fail, but trust me, dive right in and just do something. Once you start, whether it be a new play idea, an educational session, or an outing, you will find your way and there will great value in the ideas that do not work out as you planned. If Beth resists your attempts to interact with her or teach her something, divide the task or goal into smaller concrete steps or go back to a previous developmental step to work on foundations. Don’t be afraid to put an idea or activity on hold and come back to it. This is not failure, it is giving her time to develop on her own path and you time to process the attempt and come up with new ideas. Also, if Beth shows interest in something, don’t be in a rush to move on to the next level. Just enjoy interacting with her where she is for a while and look for signs of readiness before you try to add more complexity or go onto another developmental goal. For the most part, development will come in very small expansions on familiar ideas.
  4. “Well, at least my kid doesn’t…” Take the advice of Bob Newhart and just stop it with these statements, because most likely she will do these things (https://www.youtube.com/watch?v=Ow0lr63y4Mw). She is not doing it now, but she will bite, kick, scream, meltdown, etc. but luckily for you she eventually grows out of it for the most part (for now, never say never, you still have the teenage years coming). The reasons for the aggression included communication delays, boredom, demand was too high for tasks, and extreme fatigue due to sleep issues. Also, she will be a big time stimmer, especially flapping and repetitive vocalizations in interesting voices. The stims will emerge over time and it shock you at first, but you will grow to accept them and learn how to use them. Her different stims will reveal her inner state and give you nonverbal clues to show when she is happy or uncomfortable (for example, sick, in pain, or needs to have a bowel movement). You will also learn how to use stims to motivate her to do non-preferred things and to help her cope in stressful situations.

    Flap Happy Kid

    Flap Happy Kid

  5. Sleeping. Brace yourself and pass the coffee. You will try melatonin with little success. You will try various locations and beds configurations, such as sleeping on the couch from ages 3-4, in a pack and play and a bed tent at 4, and finally sleeping in a large bed in the middle with several pillows surrounding her to prevent her from hitting walls when she flails her arms in her sleep. Foam board on her bedroom window to block out light and sound and the right noise maker helps. Exercise helps. But the biggest help is time. She will start sleeping much better at 5.
  6. Move It! She will have enormous difficulty moving from point A to B and moving her body. This issue is core, so it must be worked on every day. Music and imitation will be a huge help for her motor planning development. Also, hide her favorite mouthing items (edible toothpaste, floss) in various locations of the house and work from staring at the item a foot away to hiding it in separate rooms and using more and more complex hints. Any movement should be cherished, so welcome large therapy balls into your home, and encourage “traditionally forbidden activities” such as climbing on furniture and  jumping on the couch/bed.

    Yes, you be estatic when you find her hanging onto spindles while standing on the bac of the couch.

    Yes, you be ecstatic when you find her hanging onto spindles while standing on the back of the couch.

  7. Potty Training. Get out the Clorox wipes, because this is going to be a long, messy haul! Even now she struggles with understanding her potty signs and usually runs to the toilet only after the urge is dire. You made a lot of progress in tiny steps (first pee and poop on the little potty in front of the TV, then pee in the toilet but poop on the little potty in front of the TV, then you discovered she relaxes with certain visual stim like the iPad and marble run and used that to relax her before darting off to the big toilet for BMs, and now we are still working on requesting to go potty in public places). Through elimination diet you will learn she is sensitive to soy, almond milk and has lactose intolerance, and elimination or reduction of these foods will make BMs more comfortable for her and reduce the number from 4-5 to 1-2 a day.
  8. Respect the Physical Issues Behind the “Behavior.” Your biggest regret will be that you didn’t have PT and OT come watch the behavioral therapists while they worked with her and while she was at preschool. She can’t sit on the floor and in certain chairs because of low tone, so get her a fully supported chair, give her breaks, and let her stand at a table to work until she is ready to sit. She can’t pay attention to work presented to her because of visual scanning issues, so reduce clutter, use slant boards and recipe book holders, and encourage her to look across the whole field by sweeping across or circling the region she needs to attend to with your hand. She has tremendous difficulty with all motor planning, so reduce or eliminate these barriers, even going so far as to rest her hand on the table in front of a picture when you want her to point because it takes so much effort to raise her arm and then move forward. Because of physical issues, attending to tasks will take enormous effort, so short sessions are a must (at age 5 she is doing 12 minute sessions and uses a visual timer).

    This is where you are headed - distraction free work area, smooth backed chair with full support and foam tape on the floor to prevent chair from slipping, table at a good working height.

    Future work space: distraction free work area, stands for ipads and books to help her read more easily, smooth backed chair with full support and foam tape on the floor to prevent chair from slipping, table at a good working height.

  9. Developmental Trackers Like the VB-Mapp (http://www.marksundberg.com/vb-mapp.htm) are Just Tools, They are NOT… a replacement for common sense, critical thinking, and good teaching. Because of the VB-Mapp, there is a time limit on how long the therapists will give your child to answer questions due to the core belief by behaviorists that taking a long time to answer is a behavioral issue. They will cut off your child’s thinking and feed her answers using errorless teaching, which she will grow to hate because she has slow processing and motor planning issues. You will argue that your child just needs more time, but you will compromise how long to wait, which will be a big regret. The therapists will want to work on all deficits, but use her strengths (naming colors, letters, numbers) or she will lose the skills and her confidence. The VB-Mapp advises that “barriers to learning” are mostly behavioral, which is wrong. Beth needs support due to all the physical challenges stated in number 8 above and it is the reason behind many behavioral “issues.”  Do not let the therapists use the same language with Beth over and over, because she has trouble with motor planning, so when she finally learns a language pattern it has a tendency to get stuck. Be very wary of the goals in the VB-Mapp that have “or” in them, because it will be the cause of missing core issues, such Beth’s face blindness. Also, read the details in the secondary skills tracking list even if it is not required because Beth meets the milestone on the primary list.  Otherwise, things like teaching yes/no will be missed. Fight for putting yes/no on the IEP even if the other therapists do not want to because it will “lead to less words.”  Yes/no is empowering for your child and any language that is empowering must be taught first. There are many other issues you will have with the VB-Mapp, so be wary!
  10. Play Will Come Slowly and Will Be Unique. For the love of God, DO NOT GIVE AWAY HER FAVORITE BABY TOYS AND “STIM” TOYS! She has an emotional attachment to certain toys and she will ask for them when she finally has the words and you will end up buying replacement toys. Let her dump things and set out invitations to play on tables, because it is the only way she can find things with her motor planning issues. Play games where she searches for her favorite edibles among the toys so that she can find where her toys are located. Practice taking toys out and skip clean up until she can manage it. Eventually when some of her sound and spinning stims calm down, you will be able to use them to expand her play. Before she can play, she needs to be able to use her hands. Using her hands is difficult, so incorporate hand use into her favorite activities, like using tools while cooking, squeezing colored seltzer water from condiment bottles into other containers on the light table, opening up containers to get her favorite foods and drinks, flushing toilets to watch the spin, and using a gum ball machine with a twisty ramp dispenser to watch the gum ball spin down. Interactive play will start at 5 with activities like ball play, balloon play, interacting on trampolines, singing songs, and marching while playing instruments, but everything you do with her up until that point is a foundation for future play.
    Turning the (Very Tough) Handle on the Gumball Machine

    Psst! She is motivated by the gum ball spinning down the twisty slide!  Use her spin stims to motivate her!

    Take note when she says "big bubbles" when you blow bubbles for her. She means it, and it is a huge opportunity for expansion of play!

    Take note when she says “big bubbles” while you blow bubbles for her. She means it, and it is literally a huge opportunity for expansion of play!

  11. Dressing. Dressing herself will come very slowly. Start with the things that are easiest for her, then move on. Independent dressing will unfold like this (from what will be mastered first to last): 1. taking everything off, 2. pants on, 3. socks on, 4. underwear on, 5. coat on, 6. shirt on, 7. shoes on (depending on the shoes, some are easier than others). The order is dictated by her motor planning, low tone, and body awareness, which impacts her coordination, balance, and ability to support herself while dressing. Teach her to find the support she needs while dressing (for example, leaning against a wall to put on underwear or sitting on the couch to put on socks).
  12. Find Your Peeps. Your peeps will be found on outings, at special needs music classes, and at special needs events you set up through meetups and closed FB groups. Online support will come from blogging, your Fumbling Thru Autism Facebook page, and the pages of special needs parents with a positive outlook. The most insight about your child will come from people who have autism and blog and/or write about their experiences (Judy Endow, Stephen Shore, Temple Grandin, John Elder Robinson, Daniel Tammet, just to name a few).
  13. Believe in Yourself. You will not believe me when I tell you this, but Beth will hit age 4 and you will decide that whatever many of the therapists are doing with your child is not working out, so you want to try some things on your own. You will decide to homeschool her for preschool at age 4 and Kindergarten. Several people will think you are nuts. But there is nothing wrong with letting your child learn to navigate the world, use her body, integrate her senses, gain more language to express needs, and cope better before she is expected to succeed in academics in a classroom setting. Isn’t that what we do for many young children and why should that be different for the child with delays and uneven development?

    Making letter A bread. Homeschooling is not as scary or crazy as it seems Mom, so relax!

    Making letter A bread. Homeschooling is not as scary or crazy as it seems Mom, so relax!

  14. Forgive yourself. You will get impatient, frustrated, raise your voice, miss cues, expect too much, expect too little, miss things, try things that don’t work for too long, etc. That is life. Forgive yourself, say sorry to your kid, and move on. You guys have work to do and a life to enjoy.

What Went Wrong With Our Early Intervention Program?

As most of you following my blog know, Beth made little progress with intensive early intervention from age 3-4. Then we quit and went it alone for the most part, although we see a speech therapist and music therapist (and we have had intermittent help from Floortime and occupational therapists along the way). This year of homeschool has been great for so many reasons. I have confidence that I can teach Beth anything, her engagement is way up, and she has made some amazing academic progress. She is still quite delayed in language and social areas, but she is definitely progressing.  Recently Beth is showing signs of the beginnings of school readiness (noticing other children and following them in stores and on the playground, more self-regulation on outings and on the playground, more language for expressing basic needs and communicating ideas, ability to sit in a chair and attend to school work for short periods, and in general she is just calmer). So, we are contemplating talking to the public school this winter regarding placement next year.

In preparation for talking with the school, I pulled out Beth’s old IEP (the learning contract that the early intervention therapists followed from 3-4). Suffice it to say, it made me feel a bit sick to my stomach. If only I knew then what I know now. And as we did in Corporate America after a project that was filled with problems was over, this post will be postmortem of our Early Intervention Program and will outline lessons learned. The goal for me is to not make the same mistakes twice, but I also thought I would share this with others so they can avoid these kinds of mistakes from happening in the first place.

Too Many Goals, Too Many Therapists, Too Many Hours

We had 27 goals (behavioral, occupational, speech, and physical therapy goals) in Beth’s IEP at 3 years old. I did an informal survey of parents who have kids with autism and they all agreed that 27 goals is far too many for a 3-year-old. Our initial goals were set by a special education teacher who was in charge of Beth’s evaluations and paperwork and they were largely copy/paste with the assurance that “the team can just change the goals once they work with her.” But what I found is the team kept hammering on the original goals, and revising the goals only happened 8 months later after it became clear we were not meeting any goals (except 1 PT goal) and I pushed hard for revisions. By that point there was infighting about why things were not working and soon after a valuable team member quit. I removed speech therapy from the plan because the speech therapist didn’t seem to want to step on the behavioral therapists toes with their “verbal behavior” work and was not adding value and I removed physical therapy because Beth was the least delayed in that area and the physical therapist said, “It is the least of your worries.”  

So, 8 months after starting intensive therapy at age 3, Beth was a stressed out mess and she wasn’t progressing. We had IEP meetings and came up with some new strategies and goals. The team tried to re-write the IEP, but the IEP was still complicated and it had almost the same number of goals. Subsequently, Beth did not improve in preschool, in the home-based program goals, or in her stress levels (aggression and sleeping issues were at their worst and life was miserable, especially for Beth). So, at the age of 4, we took a break from all services after preschool was done, because we decided to let her calm down while I taught her myself. Now after 1.5 years of working with Beth on my own and looking back, I believe a significant root cause of Beth’s unproductive year in early intervention was simply too many goals, too many therapists, and too many hours. We had 6-7 therapist at the beginning, they worked for 4 separate companies, and the behaviorists had a 3 tier management hierarchy that impeded innovation and quick changes to the IEP. In addition to the bureaucratic problems with the program, Beth was still in a prolonged stranger anxiety phase and integration was such that she could barely interact with two people she knew (like my husband and I) at the same time let alone multiple strangers, which meant all those therapists coming at her for 20+ hours a week was simply overwhelming. And underlying those problems was that Beth just wasn’t ready for the program and many of the goals in her IEP .

Misunderstanding of Readiness and Unique Developmental Path

When I look at the goals in her IEP at 3 years old, what stands out is that she was not ready for many of the goals in the document. I know that because she is just now meeting many of them and I witnessed her development unfold over the past 1.5 years. So I guess there was an assessment and goal setting problem. But Beth also does a lot of developmental dipping. She will do something once or twice sometimes, but she may slip back into a previous developmental stage again and stay there until she is really ready. The appearance of Beth being ready for more than she could handle with communication and academics fooled both me and the therapists, and led to problems in goal setting. In addition, Beth had very uneven development and we had numerous goals to choose from ranging from 12 month level to 3-year-old level. When I look back now at which developmental milestones came first, we were totally of the mark in the goals that we chose.

Since it is difficult to assess when Beth is ready for goals and she is all over the “typical” developmental map, how should we have set the goals? The only answer in my mind is we must use her strengths and interests  and simultaneously have the developmental map in mind so that we could recognize when she is truly ready. It takes a lot of experimentation and revisiting things you have tried before that did not work. It also takes innovative teaching to find her true abilities, because fairly severe motor planning, attention, and communication issues muddy the picture. Unfortunately, using her strengths and interests did not happen and innovative teaching was lacking.

Missed Opportunities for Using Strengths and Interests

According to the “typical” developmental chart, Beth had some higher level academic abilities at 3 (for example, she knew colors, shapes, numbers, letters), and those were not set as goals because we were working on other things according to the VB-MAPP (I will go into some detail about my issues with the VB-MAPP in another post, because I have a few big bones to pick with it). The biggest mistake is that we did not use what she already knew, like colors, shapes, and numbers, for goal setting. We were trying to get her to play with typical toys, name objects, play certain physical games, and use her hands for certain tasks. Why didn’t we just have her name colors first?  Why didn’t we go straight to making letters for hand-use goals since she loved them so much? We could have done a letter obstacle course. She liked iSpy books, why didn’t we start there for the receptive language identification and make books that looked like her iSpy books. So many missed opportunities. And by the end of the year of early intervention, we were all so busy trying to get her to talk and do new things, she had forgotten colors, shapes, numbers, some letters, and how to do the iSpy book. I will never make this mistake again. If Beth goes to school next year, her strengths and interests will be in that document somewhere and it will not be forgotten this time around.

Lack of Integration of Goals

Why separate verbal goals from physical and occupational therapy goals just because they have different therapists? Based on goals that we have met in the last 1.5 years on our own, I believe that all the goals should be integrated. For example, on Beth’s old IEP we have ball play goals. But we do ball play now for social interaction, listening skills, and slow expansion of her visual scanning (we started by throwing it directly at Beth, now we are moving away from her core and up high or off to the side).  We even taught her to count while playing ball to extend her time playing and to work on counting and she loves it. She loves it so much she will toss a ball back and forth with another kid now. Ball play is not just a PT goal, it is a PT, behavioral, speech, and OT goal. Beth, like any other kid, learns best in an integrated fashion.

Physical Issues are Primary Problems, but Were Not Adequately Recognized or Addressed in Many Goals

This is a goal in her old IEP: “Will demonstrate improved visual motor control (coordinate trunk, head and neck control with vision) to complete an activity with minimal to moderate cueing, i.e., scanning for materials and direction from variables sources over 3 data collection points.” I believe that was an occupational goal and I think it was trying to get at one of Beth’s core issues, which is that she has physical problems which make doing nearly anything academic hard for her. Motor planning, low tone, and head/neck issues are the reason she has trouble sitting on the floor, sitting in a chair or attending for long periods, and scanning for items during reading and other activities. As it turns out there were many IEP goals written by the behaviorists that required her to do these things, with no regard for how physically difficult it was for Beth to do the tasks or how to accommodate her. Again this is partially problem of integration of IEP goals and ideas across therapists, but it also reveals what can happen when behaviorists take over a program and don’t consider the reasons for “behaviors” and don’t consult the other therapists. Basically, they were working in a silo. Maybe if they would have discussed the visual scanning issue, they would have realized that visual scanning tasks (like beginning iSpy books with only a few items) should really be the first goal, not matching a field of ten identical and non-identical items (yes, that is an actual goal from her IEP, sigh).

Onward

The past is the past, and I can’t change it. But going forward, any future IEP in school will include the following:

  • There will be a minimal number of therapists involved. I want the teacher to be the leader, with mostly consults from other fields (except speech therapy). If I can’t get people to integrate, then this is the best I can do.
  • There will be minimal targeted goals that are at the right level.
  • Beth’s interests and strengths will be stated, as a starting point or as a teaching strategy in every goal.
  • The goals will be integrated, with underlying physical issues appropriately recognized and accommodated.
  • Beth’s optimal learning strategies will be specially stated, in an effort to get others to use the strategies we have developed through long hours of experimentation.

Middle-of-the-Road Autism

You are standing in the middle-of-the-road in autism land and wondering how you got here. You look to the left and there seems to be a ocean of milds who are surging ahead. You look to the right and you see a smaller pool of more severes (deemed severe by your own definition, since no one can agree what severe really means, and looks are often very deceiving). And here you are, stuck in the middle of the road, with that damn Pretenders song playing on repeat in your head (and despite having a mega hit song Middle of the Road, I can’t find a good image with Chrissie standing in the middle of a road, only a grainy image of her in that sequin hat from the video):

Chrissie Hynde

Actually, us middle-of-the-roaders feel more like the guy in this album cover (a long stretch of road ahead of us, trying to figure out how to get where we need to be when we don’t even know where the hell that is):

middle of the road

It is a tough road, so I wrote this post to let you know you are not alone.

You have probably heard some of these phrases at some point, starting from when your child was young and newly diagnosed to the point you find yourself now:

“Are you sure he/she has autism?”

“He/she is still young”

“He/she has some language, and that is a good sign”

“He/she is so smart”

“There is so much promise”

“He/she can do so many great things”

“We had such a great early intervention team. Are you sure they did things right?” (this one is usually followed by a barrage of questions, trying to figure out what your team didn’t do that their team did)

“Try this therapy, it worked miracles for us” (this is a popular one with the biomedical solutions crowd)

“My kid just surged ahead one day, it could happen for you”

You may be mad. Mad that the therapies didn’t work like you expected, mad that other people who clearly had children with a different genetic profile from your child don’t seem to understand your situation, and mad because you have some unresolved and chronic grief. It is okay to get mad. That is completely normal.

You may also be sad, or even depressed. That too is completely normal. I was depressed for an entire year during early intervention when things were not going as I hoped. I dip into sadness frequently and I have learned to dip in and then get the hell out as quickly as possible. Some of my fellow middle-of-the-roaders talked to their doctors and got help for their depression in the form of talk therapy or a pill. Please do that if you need it. All of these sad feelings, all of these approaches to dealing with the sad feelings, are normal and acceptable. Do what you have to do.

But you can’t stay mad and sad forever. So what next? Acceptance of course. But how? Everyone has to find their own road to acceptance, but this has helped me:

  • I have accepted there is no magic bullet. This is a slow slog, where my child is developing according to her own unique developmental path.
  • I found Facebook page owners who focus on practical problem-solving and acceptance of children with autism. Joining autism advocacy, presume competence, or neurodiversity pages will help you get into the “acceptance” frame of mind. You don’t have to agree with every post the page-owners make. Examples of my favorites are Mama Be Good (https://www.facebook.com/mamabegood), Emma’s Hope Book (https://www.facebook.com/EmmasHopeBook), and Judy Endow (https://www.facebook.com/JudyEndow).  There are MANY pages out there, so spend time joining and unjoining to find a core set of pages that help you with acceptance.
  • I found a local group of people who are also slow-slogging it. Finding them took awhile. I went to special needs gatherings, formed my own special needs groups, ran my own events, and joined as many special needs groups that I could find in my area (to start, check meetup.com, google search for closed facebook groups, search yahoo groups).
  • I have decided that my relationship with my child is more important than pushing her ahead before she is ready. I suggest looking into relationship-based “therapies” (Floortime, RDI [Relationship Development Intervention], or Son-Rise). Do the methods suggested by the therapies not because you are searching for that magic bullet, but because the therapies will give you tools to interact and understand your child better.

Respecting the Stim Series, Post #2: Spin Thing

Note: For a definition of stim and background for this series, see http://wp.me/p2OomI-PY.

This is a Pop-Onz toy. It is designed to encourage very young children to build. There are two circular areas of the toy’s table where kids can place blocks and watch them spin around. The toy is notable because it is VERY hard to “pop” the building units onto the table, which makes it a terrible first building toy. This design flaw is probably why these toys aren’t made anymore and they can only be found on eBay and in thrift stores. The Pop-Onz toy is also notable to me personally, because it signifies the history of my daughter Beth’s spin stim.

pop-onz

The Beginning of Spin Stim

Beth was about two and a half when she started at her first preschool. Within weeks of starting preschool, Beth’s teacher called my husband and I to a meeting and said she was “very worried” about Beth.  The teacher recommended a developmental evaluation by a medical doctor for diagnosis and a school system evaluation for therapy support. We knew Beth was stressed, but we thought she would eventually adapt. Beth did not adapt as anticipated and we pulled Beth from the school and started intensive therapy at home for autism. Looking back, I realize Beth tried to adapt in her own way.  For example, at the school playground she rocked on a rocking toy and threw wood chips to soothe herself (now I know these are common sensory/stim activities for children with autism, but I was clueless at the time).  And every morning at drop off as I turned to leave Beth at preschool, she ran to a Pop-Onz toy sitting in the corner of her preschool room and pressed the button to absorb herself in the spinning characters.  She was desperately trying to soothe herself.

Fighting the Spin Stim

Since Beth loved the Pop-Onz toy at her preschool, I bought the same toy for home. But Beth seem overly preoccupied with the spinning characters on the Pop-Onz toy. If I would try to talk to her while she was using the toy or interrupt the spinning to show her how to build on it, she would either ignore me, walk away, or get frustrated. I asked therapists what I should do about the preoccupation with spin and how we could use it in play, but no one had an answer. The prevailing view was we had to get rid of spin toys like the Pop-Onz so that we could work with Beth to help her play in a traditional way.  The Pop-Onz toy went into the attic along with other stim toys that were “too obsessive” and we spent years trying to coax Beth to play with us the traditional way. The end result of elimination of stim toys (electronic toys with spinning, music, and sounds) was no real progress with play milestones and no improvement in hand use during play. One day I gave in and ended up right back where I started, trying to use stims like spin (and sound…a topic for the next post) to help Beth develop.

Using Spin Stim as a Motivator

Since I was having no luck building with Beth using traditional means despite trying a variety of toys and approaches, I resurrected the Pop-Onz toy. First we build (sometimes I block the button while we build), then Beth presses the button to have the spin as a reward. Recently I noticed she really likes some of the structures we build because she smiles and flaps a lot when they spin, so she is learning that building different things can be interesting. When Beth was younger, she would have been frustrated because she lacked the hand strength and coordination needed to pop the blocks on the nubs, so I doubt we would have been able to use this toy for building back then. But I believe I would have been able to help Beth develop with easier building sets with spin, which underscores the importance of having appropriate toys that are in line with skill level before attempting to guide the child and expand their play and hand use.

Soon I was looking for other ways to use the spin stim.  Here are some examples of the ways I used spin stim to encourage Beth to use her hands during activities:

I thought it would be cool to try building a translucent marble run (1) on the light table with Beth. Unfortunately the translucent marble run set was too difficult for Beth in terms of building, but she liked dropping the marbles into the big funnels and watching them spin. So much so that she would get very flap happy and then do it over and over. At that point, I just surrendered. There was no way to get around the stim, so I decided to work with it. I thought of Floortime and how I could expand this activity in small ways to help her development. We worked on taking turns, but she quickly bored with that expansion. Then I showed her several times how to drop the marbles in the small funnels in the upper portion of the toy. This may not seem like a big deal, but for her to do something other than drop them in the big funnels to watch them spin was huge.  She was looking up (something she resists), so that was good for her head and neck muscles. She was dropping the marbles into a small funnel and at first she lacked the precision to get them into the funnels and missed a lot. Soon she figured out pinching was the best way to take the marbles from their holder and get them into the small funnels. Pincer grasp, hand-eye coordination practice, looking up during an activity, all while having a good time…score! For the next phase I need to get a marble run set which is easy to put together and has a final structure with a motivating spin as the reward. If you have a suggestion for this type of toy, please leave a comment on this post or my Facebook page.

My friend introduced me to gear building toys, which work great for spin stimmers like Beth.  Here are some examples of Beth and I building with gear sets (2, 3).

A giant gum ball machine in a local ice cream shop was a huge spin stim hit.  Beth learned to put in the quarter and work a handle that was very difficult to turn in order to dispense the gumball down a giant twisty slide in the bottom of the gumball machine.  Normally she would have given up on a handle that difficult to turn, but seeing that gumball spin around and around coming down the slide was very motivating to her.  She could care less about eating the gumball, so she won’t dispense gumballs in machines without the twisty slide.

Inserting Quarter in Gumball Machine

Inserting a Quarter in the Giant Gumball Machine

Turning the (Very Tough) Handle on the Gumball Machine

Turning the (Very Tough) Handle on the Giant Gumball Machine

The Gumball Machine Slide Stim Spin Reward

The Giant Gumball Machine Slide Stim Spin Reward (Well Worth the Quarter Per Gumball)

Spin Stim for Relaxation

In addition to being a good motivator for play and hand use work, spin stim is very important tool for relaxation.  For example, Beth does best in restaurants that have fans running because she can gaze at them to relax.  Also, spin toys have another purpose other than play…they help Beth relax before bowel movements.  The tough part about using stim toys for relaxation is when and how to make them available so that Beth is not using them all day long. Recently I have put the Pop-Onz, gears, and marble run up on bookshelves and I only bring them down if she asks for them or if I think she needs to relax before a bowel movement (or if I want to initiate a building session).

Final Thoughts….

I feel we would have been better off if we had included spin stim as a motivator for play and hand use development from the start of therapy (as long as the building sets were easy and at Beth’s skill level). I do feel the stims have a purpose, and my child’s brain is wired to enjoy the spin. I feel my role is to understand the purpose of my child’s stims, be creative about how to use them help my child develop, and create a balanced approach that includes a time for all activities, including those with stim.

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1. http://www.amazon.com/Marbulous-Translucent-Marble-pieces-plus-marbles/dp/B000XA80XG/ref=sr_1_1?ie=UTF8&qid=1373570748&sr=8-1&keywords=marble+run+clear

2. http://www.amazon.com/Tomy-T6526-TOMY-Gearation-Building/dp/B00000ISEH/ref=sr_1_10?s=toys-and-games&ie=UTF8&qid=1373570788&sr=1-10&keywords=gears

3. http://www.amazon.com/Quercetti-Georello-Kaleido-Gears-pieces/dp/B00000J048/ref=sr_1_2?s=toys-and-games&ie=UTF8&qid=1373570766&sr=1-2&keywords=gears

Musings on Autism and Attention-Deficit/Hyperactivity Disorder (ADHD)

Beth was diagnosed with autism at nearly 3 years old. ADHD was not mentioned anywhere on her evaluation report.  Which made sense at the time, because her diagnosis was based on the DSM-IV manual, which did not allow for an additional diagnosis of ADHD if a diagnosis of autism was given. With the release of the DSM-V manual and a change to the ADHD criteria, a diagnosis of autism is no longer an exclusion for an additional ADHD diagnosis (http://www.dsm5.org/Documents/ADHD%20Fact%20Sheet.pdf).  To read more about this, see this great post by Autsim and Oughtisms – http://autismandoughtisms.wordpress.com/2012/10/29/change-in-the-relationship-between-adhd-and-autism-in-the-dsm-5/).

I recently had an “aha” moment. I think Beth has ADHD, and in many ways ADHD has a bigger impact than autism does when we homeschool. In this post I want to describe how I came to this ADHD realization through the example of Beth’s struggle with puzzles.

Puzzling Problem

Beth Working on a Dora Puzzle (Reference Image of Completed Puzzle Taken and Saved on the iPad)

Beth Working on a Dora Puzzle (Reference Image of Completed Puzzle Taken and Saved on the iPad)

Remember my puzzle post (https://fumblingthruautism.wordpress.com/2013/01/21/from-the-ipad-to-the-real-world-puzzles/)? Converting iPad puzzles to real-world versions was a huge step, because Beth stopped hating puzzles and would do a puzzle with me without a complete meltdown.

The following is the good news about puzzles:

  • Beth’s filtering of sights and noises in the home environment is much better. For example, she no longer stares at the light seeping through the mini blinds or fixates on motors and sounds around the house (refrigerator, freezer, and heater motors in the house, planes flying over the house, lawn mowers outside, etc.).
  • I let Beth stand for a long time to do puzzles, until one day she decided on her own to sit. I put a weighted vest on her recently, and it seems to help her sit still. Now she can sit and do several puzzles.
  • Beth’s fine motor skills have improved, so her puzzle piece manipulation is very good.
  • Beth can follow my verbal instructions if she is having trouble (for example, if I say “turn the piece more” or “try another piece” she understands and takes the direction).
  • I verbally guide Beth based on color when she gets stuck, so puzzles with more color variation work best.
  • Taking a picture of a completed puzzle with the iPad and using the image for reference is becoming helpful to Beth.
  • If Beth knows the picture very well and really likes it, she does the puzzle more independently.

The frustrating news is she still can’t do puzzles independently. Even simple 6-piece puzzles. We have been doing a couple puzzles each day (with lots of oral rewards, praise, and also in a Floortime cooperative style), but progress is slow.

“I Can’t Do It”

Last week we were working on a puzzle and Beth said in a matter of fact way, “I can’t do it.”  Beth had used that statement one other time while doing fine motor work at an Occupational Therapy (OT) session a couple weeks ago.  I honestly thought I heard her wrong at the OT session, but this time it was crystal clear. First of all, that type of verbal statement is complex for her. It surprised me that she used the pronoun correctly, a contraction, and made a complete sentence. No one ever said anything like to her, so it is truly remarkable. But it is also heartbreaking. Her confidence is low and she is well aware that I want her to do a puzzle, but she is not able to do it. I told her I know it is hard, but I she can do it, and I can help her through it. But inside I knew we had to make a change in our approach yet again. We were missing a piece to the puzzle problem.

Just Slow Down

What happens if I let Beth do a puzzle without any guidance? Well, she grabs one piece in one hand, one in the other, starts shoving pieces in the puzzle board in a frantic way. She doesn’t check for corners or edges, she doesn’t try find the next piece to build off of a piece that is already in the puzzle, she won’t reference the picture, and on and on. The underlying problem is that she is working without thinking. It is not that she doesn’t understand how to do it, she can do quite well with some relatively minor guidance. She just can’t slow down. And this is a problem that I keep running into with her. Here are a few more examples:

  • I am teaching her to use Proloquo2Go on the iPad, a “talker” where she presses the buttons as a means of communication. Our biggest hurdle is that she impulsively presses the buttons without taking the time to examine the options, much as I described in this iPad app post long ago (https://fumblingthruautism.wordpress.com/2012/12/20/preschool-with-the-ipad-listen-think-poke/).
  • While cutting along a line, she rushes as fast as possible.  If I introduce a slight curve at the end of the line she blasts right by it and keeps cutting.
  • The girl can’t sit still. She just can’t. Is that autism?  Or is it ADHD?

Who Cares About Labels Anyway?

I know, we could argue about the traits of autism, the parts of the brain affected, executive function, and how that can explain the ADHD traits and blah, blah blah. I can see the logic in those arguments. So why should I care if she has ADHD or just autism?

I care because all this time I was thinking it was her autism that hindered her learning. I was thinking maybe she didn’t understand what I was trying to teach her or why she should care, or she misunderstood my words due to language delays, or she had fine motor barriers, or she had a sensory issue that interfered with her ability to concentrate and sit still. Yes, she had all those problems, but with homeschooling we have knocked out the sensory issues and now her fine motor, receptive language, and ability to follow directions has greatly improved. In our home, she can sit long enough to do a task now, the joint attention is manageable, and stimming is at a minimum. If I run down the list of ADHD traits, those are the characteristics that are our biggest hurdle. And if I think of the problem that way, my focus is different for homeschooling.  Rewards, praise, and guidance is centered on trying to slow things down due to her impulsive nature. Which is much different giving rewards, praise, and guidance just to get her to complete the task. So, I am going to try this new way of thinking, work on helping Beth manage her impulsive tendencies, and see where it leads us.