No, I know. In all seriousness, it’s Team Braverman from the NBC program “Parenthood”. One of the show’s main storylines portrays a family whose son is diagnosed with Asperger’s Syndrome. This image is from the episode where the family participates in an Autism Speaks walk. The plot revolves around the struggle a family faces when they are deciding how they should tell their child about his or her diagnosis.
I have been hooked on this show for the last few weeks. I find the way ‘Parenthood’ tackles difficult topics to be touching and feel that it is an realistic account of a family ‘behind the scenes’. I spend a lot of time with families dealing with many of these same issues and can only imagine being in their shoes. From where I stand this show seems to be a powerful and accurate portrayal of life with a child with Asperger’s. However, I’m curious how parents, grandparents and other clinicians are reacting to the program.
Did you know that AMC Entertainment and The Autism Society have joined forces and are offering special monthly film showings for families with children diagnosed with autistic spectrum disorders to enjoy a movie together? They adjust the lights, turn down the sound and are understanding of variations in attending and sitting behaviors. Find a location near you!
Below is an article our old friend Dr. Erica Holding wrote about the importance of early diagnosis and intervention that will be helpful to any friend or family member on this journey. We’ve known Erica since way back when Different Roads to Learning first started and she was with the River Street School. Fifteen years later, she holds a Specialist Certification in Infant and Early Childhood Development (I.S.I.S.) from Rutgers and is a Board Certified Behavior Analyst-Doctoral level (BCBA-D). Her professional experience includes the assessment, diagnosis, and treatment of children with a variety of developmental disabilities and behavior disorders in school, home, community, and clinic settings. Her interests lie in the remediation of developmental delays and behavior disorders in children and in helping families achieve happier relationships and experiences. You can currently find her at Building Blocks of Orange County https://www.ocbuildingblocks.com/.
A Different Kind of Baby B.L.I.S.S.®
Hello All!
I wanted to share with everyone some information that is near and dear to my heart and a difficult subject for most parents to talk about openly.
Autism
It is in the news and it’s everywhere. It’s something that everyone knows about now and it is highly likely that you have a friend or family member who has been touched by this disorder. Nonetheless it is one of those issues that most people are afraid to talk about because the diagnosis itself is devastatingly hard to hear and to deal with. I can remember when my baby was born a year ago being absolutely so amazed by this little tiny life that my husband and I had created. I truly felt baby bliss when I remember looking into his face and just watching him move, watching him sleep, every little movement filled my heart with such love. The thought of anything being wrong with him EVER was just something I couldn’t even think about. But as the months went by I realized that I had better do the things I always tell the parents I work with to do. This is to be a loving, proactive and honest observer of his development.
I have some expertise with Autism in having worked with families and kids with autism spectrum disorders for almost 20 years. In all of the years that I have done this work, there is always one question that parents ask me that is so hard for me to answer. This question usually comes some time after their child has been diagnosed and the parents have started to go through the painful process of coming to grips with the diagnosis and their child is getting much needed intervention. And that question is: “Dr. Holding, do you think my child would be doing better if we had started earlier?” And as I see the pain and sorrow and worry in their eyes that if they had followed their gut instincts sooner, if they had listened to recommendations for treatment, their child would be making the kind of gains all parents with this diagnosis dream of and hope for.
If I could take one thing away from parents, it would be the self-blame and regret they go through along the journey of helping their child overcome one of the most difficult diagnoses all parents dread to hear. Bottom line is I can’t answer that question. I have worked with some families whose children haven’t gotten services until they were four or five, and their response to treatment is everything we could have hoped for. Other children have started younger than two and yet fail to make the kind of gains that should have come. However, I know that starting as early as possible is still the best way to ensure the best possible outcome. So I always tell families this: “Wherever we are now, that is where we are right now. There is no sense in lamenting the past. What we need to do is put all of our energies in to doing everything we can to ensure the best outcome for your child.” I know they know that I am right, but I know it doesn’t stop the many sleepless nights and often doesn’t alleviate the pain over their own choices and concerns for their child.
There is Hope
Fortunately over the last decade there have been wonderful resources for parents to turn to for questions about autism and autism treatment. If you do a Google search on the topic, thousands upon thousands of articles, blogs, products, and services can be found. But how as a parent do you get through all of that information to the stuff that is most valuable and useful for your child? At the end of this article I have some trusted resources for you to have in your library of information for yourself or for your friends and family who may be struggling with the possibility of an autism diagnosis. First However, I want to make sure you know the basics.
1. Autism is a neurobiological diagnosis with presently no known single causative factor.
2. The basic characteristics of autism include repetitive behaviors and impairment in verbal communication and social interaction skills that can range from mild to severe impairment.
3. At the present time, it is reported to affect one in every 100 children in the United States.
4. Autism is four times more likely to occur in boys
5. Leaving arguments about vaccinations aside, we are now coming to find out that it is likely that there is something going amiss in the child’s brain development during the first trimester of pregnancy. (Please see the Autism Center for Excellence: https://www.autismsandiego.org/index.php Courchesne, E., Pierce, K., Schumann, C.M., Redcay, E., Buckwalter, J.A., Kennedy, D.P., & Morgan, J. (2007). Mapping early brain development in autism. Neuron. 56: 399-413.)
6. The most recent research has been able to identify genetic variants associated with the development of autism. Please see: Functional impact of global rare copy number variation in autism spectrum disorders, Nature (2010) doi: 10.1038/nature09146 Received, 03 December 2009. Accepted 07 May 2010. Published online 09 June 2010 https://www.nature.com/nature/journal/vaop/ncurrent/abs/nature09146.html
This latest research will help with earlier diagnosing and treatment.
7. There is currently no cure for autism, but a lot can be done to change the course and outcome of the disorder that every parent should know about.
A diagnosis of autism can be made before the age three with the first signs of autism often being evident by age one. (See Early Recognition of Children with Autism: A Study of First Birthday Home Videotapes): https://depts.washington.edu/uwautism/pdf/Early_recog_of_children_with_autism.pdf
Screening for Autism at age one
This last point is the one point that I wish every parent in America knew and is what I am going to spend the rest of this article driving home. This is because, the importance of finding out early, dealing with it early, and treating early, is absolutely crucial to ensure the best possible outcome for your child. While no predictions for outcomes can really be made based on getting a diagnosis at the age of one (most diagnoses aren’t given before 16 months), the most recent information on early diagnosis and treatment are showing that children as young as 12 months who are getting behaviorally based play intervention (ABA) will have better IQ, social, and language outcomes than children that don’t. With proper intervention about 35% of these children will lose their diagnosis of autism to a milder type of delay. (Please see the article Early Intervention for Toddlers with Autism Highly Effective. ScienceDaily (Nov. 30, 2009) https://www.sciencedaily.com/releases/2009/11/091130084720.htm
The most important thing to know about why you want to start early is that there is a huge benefit to doing so. In this article, Dr. Rogers comments that,
“Infant brains are quite malleable so with this therapy we’re trying to capitalize on the potential of learning that an infant brain has in order to limit autism’s deleterious effects, to help children lead better lives,”
A lot of times when I talk with parents, they will say things to me like, “He was such a good baby, never cried, could play by himself for long periods of time.” The problem here is that parents may miss the opportunity to stimulate their young baby’s development. As with every other skill in life, we become what we practice. If your baby is not practicing interacting with you, playing with you, and “talking” with you (babbling), they are missing that precious window of time where helping to stimulate these skills might help to right their course of development and at the very least help to improve it.
Many articles have now been written about the early signs of autism and early Red Flags are listed on WebMD, Autismspeaks.org, firstsigns.org, and other sites. Please review these sites for a list of those Red Flags. (Links provided at the end)
Baby B.L.I.S.S.*
For our purposes, I have developed an easy way to remember the signs to look for as your young child is developing. When making a diagnosis, my colleagues and I focus on a baby being able to do several early developmental skills around social interactions and play. I have also created some short video clips showing these skills as they begin to develop. The video shows what your baby should be doing by their first birthday for each part of the acronym: B.L.I.S.S.
B = Babbling- your baby should be playing with vocal sounds a lot, making a variety of vowel and first consonant sounds such as b, d, and m – think mama, dada, baba, etc.
L = Looking – this involves your baby looking at you when you talk, looking back at you when they are playing to “check in”, and looking at something you point to, to see what it is.
I= Imitating – your baby should imitate your basic play actions such as clapping hands, waving bye-bye, blowing kisses, or banging blocks together, etc.
S= Sharing – your baby should share enjoyment with you by laughing and giggling for familiar games such as peak-a-boo, or “Sooo big”.
S = Showing – your baby should hold objects up to you to “show” them to you. They often won’t let go of the item, but they want to get your interest in what is interesting them. If they are walking, they may “bring” it to you to show you.
So this is the new kind of baby B.L.I.S.S. I hope every parent becomes aware of and I want you to remember it for yourselves and for all of your friends. Remember, if your friends or family have concerns, by just starting with these questions, you will know almost immediately if you should have an autism specialist take a look. It is important to note, this is by no means a diagnosis, it is just a way to be aware of the early signs so that if this is what it is, the correct course of action can be taken and a diagnostic assessment can be done as soon and as early as possible. (Resources for diagnoses and early treatment are listed below.)
Remember, when someone starts bringing up concerns about their baby, ask them if they are seeing baby BLISS. Ask them, “Does he/she babble? Does he/she look? Does he/she imitate you? Does he/she share enjoyment? And does he/she show objects/toys?” If he does, that is good news, but continues to monitor his or her progress if there are still concerns and check with your pediatrician. If he doesn’t do even one or two of these early skills, talk with your pediatrician and see a specialist in early diagnosing. And most importantly, if he or she was doing these things and stops, please see a specialist.
Here is a link to some videos of my baby, Simon, doing all of the things that a baby should be doing by their first birthday so that you can visually see what each of these skills should look like (and believe me, knowing what I know, it was just as scary for me to wait and see if he would do these things as it is for you!). While the way your child does these skills won’t be exactly like my baby does each of them, at least you will know what you should be seeing! Oh, and please be kind, I am by no means a professional videographer.
Babbling:
Looking:
Imitating (2 videos):
Sharing Enjoyment:
Showing (Same video as Looking):
This last quote is by Stanley Greenspan on the First Signs website:
“Most mommies and daddies tell me “I thought there was a problem at 14 or 15 months…and they told me let’s wait and see because sometimes some kids grow out of it.’ Well, that’s not a good answer. We’ve got to make the distinction between less important problems, where we can wait and see from core problems, which involve a lack of reciprocity and a lack of getting to know your world. For these core problems, we have to act on it yesterday. We can’t wait nine months, we can’t wait two months.”(Stanley I. Greenspan, M.D., Child Psychiatrist)
Don’t be alarmed, just be armed!
In sharing all of this information, I hope that anyone who reads this will help ensure that none of their friends have the pain of regret of not taking action as early as possible and that every child we know is able to have the happiest most joyful, and most fulfilling life possible. If I had my way, all children would be screened for autism by their first birthday and there are actually many organizations that are promoting this idea. Also, please remember, 9 times out of 10, it is not autism. Kids develop at different rates; some will be missing some of these skills and are just fine. That is why it is always better to check with someone who specializes in this to see if what you are seeing is something to be concerned about or not. This information is not provided to alarm you. It is provided to arm you with information. Important information that can help you to make informed decisions for your child and the children of those you love.
Please!Don’t wait. Give your child every opportunity by getting treatment as early as possible,
Most of all face your fears and follow your gut!
Remember that courage is not the absence of fear it is simply taking the action anyway even when you are afraid!
Be courageous for your child and for all of the children around you. They are counting on you! * Please note, please see the First Signs website listed below for all of the signs of autism. BLISS is not a complete list of symptoms and is not used to make a diagnosis or to even indicate that a child has autism. It is simply a way to help raise awareness for parents to know what they should be looking for should they be concerned about autism.
You know it is officially back to school season when the grill in my backyard has been cool to the touch for days and I’ve had my yearly medical exam (PPD titer and all!). I hope it has been smooth sailing for you and your little ones as classes begin. If it hasn’t been, this is what I always try to keep in mind, for all people, big and small:
PREPARE!
It is best to join forces with your child and prepare for the year by making sure you cover what I like to call the 3 S’s.
SPACE
Make sure everything in your child’s work/play space at home is organized and equipped. Play continues to be an important part of learning even when school is in session so take this time to go through toys and arts and crafts supplies and weed out things that are broken or no longer developmentally appropriate for your child. Make sure there is a spacious and uncluttered work space stocked with all of the supplies your child will need to complete homework and school projects. It is also a good idea to keep a space near the work area for a visual schedule to help foster independence during homework time. Lastly, designate a spot near the entrance of your home where your child’s backpack, important papers and your keys can go each afternoon. The last thing you want is to add undue stress to your morning routine and risk missing the beginning of class.
SCHEDULE
We all know that with this population transitions can be especially difficult. First, take care of as much as you can the night before. Pack bags, sign paperwork, pack lunches, and pick out clothing. Also, don’t think that a a parent you are the only one responsible for this prep work. Incorporate as many of these things into your child’s evening routine as you can. Having your child participate will foster independence and build confidence. Again, visual schedules and token economies help facilitate independence and provide motivation respectively. Structure benefits children so it is good to develop a general school year routine and stick to it as much as possible. Predictability is helpful when it comes to transitions but also remember to build in components that have some element of change to them so that you can facilitate flexibility. One part of the schedule that shouldn’t change is the sleep schedule. Keep it as consistent as possible, even on the weekends. I suggest building a calming activity into the schedule before bedtime and using a timer to help with the transition to bed.
SOCIAL
Sometimes, people find it surprising when I suggest preparation for social interactions but there are a lot of creative ways to help children familiarize themselves with conversational topics, common games and salient information about their peers and teachers. I encourage all of the families I work with to print photographs of family outings or events that can be used as visual prompts for conversational topics. Especially good are things that happened over the weekend. If the picture book is reviewed Sunday evening they will be fully prepared to talk about what they did over the weekend. Additionally, you can find out what schoolyard games are popular with your child’s peer group and practice them at home with siblings or playdates. If it is an athletic game you might also spend time with your child making a book about the rules that can be reviewed periodically. Lastly, I like to construct a “friend journal” with a child at the beginning of each school year. You might need to enlist teachers or other parents to help with this but it is such a useful tool that it is worth the extra effort. Start by obtaining photos of each classmate and pasting them individually into different sections of the journal. On a daily basis you can help your child fill in something they have learned about their peers. This could range anywhere from favorite cartoon or tv show to their age or their family members names.
Going back to school can be a fun and exciting time. With a little preparation and creativity maybe it will be the best school year yet!
As a home-based Early Intervention provider traveling to various locations throughout New York City each day, I find my iPhone to be invaluable. It is quite possibly the best “business” expense of my career. It lurks in my bag as a secret weapon of motivation and reinforcement where once a gaggle of heavy and semi-effective toys resided.
With the huge presence that technology has in our lives today it is only inevitable that some gadgets make their way into therapeutic endeavors. While there are negative effects to being plugged in all of the time, it’s hard for me to ignore those moments where technology allows a child to learn something that had been previously difficult or the amazing instances of joint attention that can be facilitated by using these apps. Without a doubt, I’m sold on the fact that the new gadgets with touch screens will continue to be an invaluable tool moving forward in my work with children. However, I can’t silence the little contradictory voice in my head telling me that teaching happens in real life, not on a screen.
Therefore, I use my iPhone in therapy sessions with children sparingly. I am the one setting limits on usage and modeling durations of time that are reasonable and appropriate. Approximately 90% of the apps I use are educational and present great opportunities for the generalization of skills taught using DTT or NET methods. I have also downloaded social skills training videos that have facilitated preparation for things like going to get a haircut. Even though that tiny voice still lurks in the back of my head, the more I read and hear, I am beginning to think that the consensus of people in this community is mainly positive.
I am most excited about programs such as Proloquo2Go, which use the iPad as a more portable and user-friendly augmentative communication device. Not unlike the endless list of apps, the uses are never-ending as well, as outlined in a great article in the SF weekly from August 11, 2010. The iPad and various apps are helping therapists and parents teach children how to draw, write, communicate, read, spell, count, and increase independence through visual schedules.
Using technology hasn’t compromised what or how much I am able to teach. It has enhanced my sessions. How do you feel about it?
Margery F. Rappaport, MA, CCC-SLP, is a speech-language pathologist in private practice in New York City. I feel very fortunate to have a colleague as experienced as Margery that I can turn to for advice and guidance.
So, I thought I could share some of her wisdom and experience with a three part ‘Question and Answer’ post. This is only the first question folks. Stay tuned for more!
I am always interested in learning what has drawn a person to a particular field or occupation. What led you to a career as a Speech-Language Pathologist? And how did you find yourself working with children diagnosed with autism spectrum disorders in particular?
A lifetime spent in helping people find their own voices may have, in my case, been preordained (if you believe in that sort of thing). After all, more than one psychic has told me that I was born under a ‘communication star’.
As an infant, 11 months of age, my mother suddenly left for a year due to severe illness. At this preverbal age, I learned the torment of being unable to communicate ones feelings and questions in words. As an adolescent with creative tendencies, I studied music and dance, and majored in theatre in college, setting out to become a professional singer. Along this path, I struggled with vocal cord nodules and was put on complete voice rest several times. As I began to question my show business career choice, which was feeling increasingly unsatisfactory, fate intervened. On a flight from New York to Boston, I chatted with a charming, articulate woman in the seat next to mine. Before landing, she said, “You realize, of course, that I am a severe stutterer”. When I registered my amazement since I had detected no signs whatsoever of a speech problem, she said “Well, I have had a lot of therapy”. Astonishing thought! People who were unable to easily express their feelings, fears or questions can change. With help and guidance they can be released from this exile. Her situation reminded me of Jean Paul Sartre’s play, No Exit, where the characters are confined in a room in hell. This woman had been trapped within herself, with no avenue of escape until she received this therapy.
Being able to communicate is so much of what it means to be human, and this notion, that impediments to communication, even severe ones, could be helped, resonated within me on many different levels. To learn more about the field, I found a secretarial job in the philosophy department of Columbia University’s Teachers’ College which allowed me to take free courses at the University. After one year and two courses in the Department of Speech-Language Pathology, I was accepted into the program on a full scholarship plus a stipend to pay my rent and buy groceries. Once in the program, I began to see how Speech Pathology allowed me to tap into dimensions of my personality that show business never had. I found great satisfaction in helping people free their expression. I was enormously stimulated intellectually by the study of neuroanatomy, linguistics, child development, psychology and the evolution of language. I came to specialize in working with children because I found they were ‘in the present moment’ and intrinsically imaginative and creative. I enjoyed working intimately with mothers on the most cherished thing in their lives, their child’s well-being. Like work in the theatre, I enjoyed the comradery of working on a team including the child, the parents, doctors and a multitude of other therapists toward one powerful goal. All these aspects of the work tapped into my essential being. I had found my life’s work. I recall a day towards the end of my training, standing in line for afternoon tea at a resort hotel in the mountains. The beautiful day room was filled with afternoon sunlight and as I thought about my impending graduation, I clearly remember thinking that I was born to do this work.
After working in clinics, hospital child evaluation units and then the Head Start program, I opened a private practice at about the time that the autism epidemic began to explode. With more good luck, I connected with professionals who were establishing groundbreaking interventions for children with autism, thus deepening my understanding and passion for helping children with severe communication challenges.
Our friends over at Rethink Autism offer a great, FREE weekly autism tip. Check out this week’s tip which focuses on going back to school.
Rethink Autism makes research-based autism treatment tools accessible and affordable for parents and professionals around the world. They have an innovative web-based platform that includes a comprehensive curriculum with over 1,200 video-based exercises, staff/parent training modules, and ongoing assessment tools – all developed by leaders in the field of autism education and research. They also offer virtual support services, ranging from short-term problem behavior assessment to ongoing case consultation with our team of experts.
