This month, 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.
It is in the news and its everywhere. Its 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: http://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 http://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): http://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) http://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)
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.
Imitating (2 videos):
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.
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.
*Dr. Holding will be presenting her talk, “What Every New Parent Needs to Know About Autism” On July 12th, 2010. This is a free presentation at the Us Too Center in Lake Forest, CA www.ustoocenter.org
Please contact Dr. Holding at email@example.com to attend this free talk.