By: Mercedes Ignasiak
When you are newly married and begin to plan a family, you hope and wish for the American dream. A perfect life, a perfect marriage and a perfect family. Unfortunately, life does not always turn out the way you plan and you can experience a bump in the road. Learning that your child has been diagnosed with a developmental delay or autism is more than a bump in the road, your life has now become a roller coast ride.
Our son was diagnosed with a developmental delay at age 2. We always knew there was something “different” about him, but we still were in denial. Well meaning family and friends kept telling us that he would “grow out of it,” since boys mature “slower” than girls. Although we wholeheartedly wished this to be true, we understood that we had to seek out a professional for an answer.
We took our son to professionals at St. Christopher’s Hospital for Children who diagnosed our son with a developmental delay and mild form of autism. The diagnosis was initially very difficult to accept. Feelings of guilt, fear and uncertainty overwhelmed us. How did this happen? Why did this happen? Where could we get help? What did the future hold? Would our son ever be “normal”?
The staff members at St. Christopher’s Hospital were very helpful and accommodating in pointing us in the right direction. We learned that our son qualified for services through the State and that he could be enrolled in Early Intervention Services. The staff encouraged us to begin applying for services immediately, since this was the key to helping our son succeed.
Soon after our appointment, we applied for Medical Assistance and our son was deemed eligible and quickly approved. We then sought out our local “base service unit” and were assigned a case manager, who helped enroll our son in an early intervention center. Once enrolled, our son did indeed begin to make strides with his development. He received occupational, speech pathology and special education services at this center in both individual and small group settings. It was a very positive experience and the services were instrumental in helping him to eventually enter learning support programs within our local school district. Our feelings of guilt and fear were beginning to change. We now had hope!
As parents, we learned to become advocates. We networked with other families too and learned all that we could on what services were available both privately and through the school district. We also began to explore outside organizations that helped increase his socialization. Some of the social programs that our son participated in were: horseback riding, special needs bowling, baseball and soccer, karate, chess club special needs CCD, a social skills club and a local church youth group. We also utilized our medical assistance Access card (Keystone Mercy), which allowed him to receive additional speech and occupational therapy services privately at a local hospital. These services, together with what he received at the school district were the keys to our son’s success.
Through our elementary school years, we worked diligently with our educators to ensure that our son continued to receive the appropriate services for his individual needs. As IEP’s (individualized education plans) were being developed, we made sure that we too were involved with the planning process. Since parents are a part of the “education team,” our input is essential.
During the high school years, at age 18, we applied for SSI (supplemental security income) in preparation for our son to leave the school district. He was approved shortly thereafter. Next, we hired an attorney to develop a special needs trust for him for the future. To fund the trust, we purchased an additional life insurance policy reflecting the trust as the beneficary.
Before we left the school district, we advocated for our son to receive job training through our school district. Our son participated in three very positive work experiences and eventually he was offered a permanent part time position. Since he felt comfortable and ready to enter the adult world, we contacted the Social Security Administration and utilized the “Ticket to Work” program. This program is available to individuals who have been approved for SSI and would like to utilize an outside agency to assist them with obtaining and maintaining jobs. Job coaches are also available to individuals as well, however, for a limited time (approximately 3 months). The agency we chose provided a job coach for our son, who not only helped him, but gave education to his boss and co-workers about autistic individuals.
It has been 4 years since my son exited the school system and began his transition to adult life. When I look back at the beginning when he was first diagnosed, I am amazed at how far he has come. Our fear turned into hope. Our hope turned into pride. Our son met all of his goals. He was now accomplished and a success!
This article is just an overview of one family’s journey. I would like to leave you with the thought that there is hope for our children. The key however is to be an educated advocate. Utilize your resources. Be sure to network with both parents and professionals. Always remember to “raise the bar” and never give up!
Recently, our son came to us and began discussing some “new” social opportunities that he learned about from one of his friends. I happened to mention that I knew of the particular program already and suggested he try it. He then turned to me and said “Mom, you really do know a lot about these things. I don’t think I would be where I am now if you didn’t do all of this. Thanks for all you’ve done for me.” I can honestly say, he wasn’t prompted to say this either! I was so touched by his statement. When my son left the room, I turned to my husband and said, “I believe our journey is now coming to an end.”
About the Author:
Mercedes Ignasiak is a parent of a 23 year old diagnosed with an ASD.
She is a volunteer member of the BCASC Education Committee
By: Dr. Jeri Sebastian, Ph.D.
If you are reading this article, it is very possible that you already have a child who has been diagnosed with autism. Perhaps you are just looking for information or, you might have questions about the diagnosis. You may also being wondering how the professional who recently evaluated your child came to that conclusion.
As a professional psychologist who has conducted literally hundreds of evaluations on children, I would like to provide you with some insight into how I go about making a diagnosis. How many of you have had this experience? “Hello, Dr. Sebastian. My name is Jane Doe. I have some concerns about my son Johnny’s behavior and my pediatrician recommended that I have him ‘evaluated.’ What does that mean exactly?”
Parents are often confused when they walk in my door for the first time and many times they are frustrated by their child’s behavior. Many of you might have felt all along that there was something just “not quite right” about your child’s development or behavior, but perhaps your pediatrician has reassured you that nothing is wrong and that Johnny is developing just fine. On the other hand, Johnny’s teacher might be telling you that she sees problems at school and you are bewildered because you don’t see it at home and Johnny seems to act like all of the other kids you know. So how does one come to this diagnosis?
First of all, it is not an exact science. There is no blood test for autism and no obvious physical signs. If your child exhibits significant developmental delays in infancy, it is likely that he/she will come to the attention of medical professionals at an early age. In these cases, the diagnosis is made fairly easily by looking for hallmark symptoms of autism. Specifically, the symptoms (just to name a few) include:
• lack of age appropriate language development
• delays in gross or fine motor skills
• lack of eye contact,
• isolation and avoidance of other children
• “fixations” on particular objects or parts of objects
The more severe the autistic symptoms, the more likely it is that the child will be diagnosed earlier and there will be less confusion about the diagnosis. I would however like to discuss case scenarios where it is less clear because the child might not have exhibited any obvious delays. These are the kids who are often diagnosed with Asperger’s Disorder or perhaps PDD NOS.
Generally, the child is brought to my office because of behavioral concerns and/or academic concerns. So you might ask, how are these more subtle cases diagnosed? I typically begin the interview by obtaining a complete developmental history of the child, as well as a family history. Some people have become offended when I ask about the family’s mental health history because they wonder what that has to do with anything. Well, in my experience, family history is extremely relevant.
It is my belief that autistic spectrum disorders (ASD) run in families and are also common in families with significant mental health issues. The child’s developmental history is important because even if he/she did not exhibit major delays in speech etc., there may be other less obvious delays. For example, I am interested in the child’s early social and educational experiences. I want to know if they attended preschool, and if there were behavioral or learning issues in school, or whether the child had trouble separating from the mother.
Social development is of course extremely important, since difficulty in socialization is one of the hallmark symptoms of ASD. Sadly, I have been told countless times by parents and by other professionals, such as teachers or physicians, that there is no way the child has autism/Asperger’s because “he has friends, he is too social, or he loves being around other children.” Whereas this might be true, the fact that the child is interested in socializing does not rule out a diagnosis of ASD. In fact, many of the children I see are quite interested in interacting with others and desperately want to make friends.
What I look for is the “quality” of the child’s interactions with others, not so much the quantity. For example, some ASD children are “too social.” They want so badly to have friends that they might “hound” a peer at school to try and develop a friendship. Unfortunately, the ASD child fails to read the social cues and they often will continue to pursue a relationship with a peer even though that child has rejected them and made it clear that they do not want to be friends. ASD children also have trouble with boundaries and they have a tendency to “get in your face” rather than being avoidant.
The ASD individual’s lack of “social awareness” can be manifested in many different ways with other children, adults, and even animals. Many a parent has described to me that their ASD child “won’t leave the dog alone. I’ve told him a hundred times to stop pulling the dog’s tail and the dog has growled at him but he continues to do it.” This can be a sign of a lack of empathy or as we often say “inability to put yourself in someone else’s shoes.”
So what else do I look for? When the child comes into my office, I try to engage him/her in conversation. Many ASD children will not engage with me and will often look away when I am speaking to them. Lack of eye contact is a red flag, as it is very common in ASD. Also, I find that ASD children have trouble answering simple questions about their friends and their favorite activities.
For example, I often ask who they are friends with or who they play with at school. Instead of listing one or two peers that they regularly interact with, these children will often reply something like, “I play with everybody” and “everyone is my friend.” Similarly, I often ask parents if their child talks about what they did at school that day and the majority of parents will say, “No. I can’t get a word out of him unless I ask and then I get a one-word answer.” This represents a lack of spontaneity in language and trouble “sharing” information with others. In contrast, there are ASD children who talk excessively and ask questions excessively even after the question has been answered. The problem is that these children talk excessively about a certain topic that interests them and they do not get involved in the “give and take” of conversation. They may continue talking without letting the other person take a turn and they might not ask the other person’s opinion or be interested in their thoughts.
Additionally, I ask questions about play skills and preferred activities. Also important is information about sensory integration issues such as whether the child is sensitive to noise, touch, light, or movement. Many of these topics are covered on standardized behavior rating scales and I often ask parents to complete a behavior scale. Some of the more common ones are the Childhood Autism Rating Scale (CARS), the Gilliam Autism Rating Scale (GARS), and the Gilliam Asperger’s Disorder Scale (GADS). These instruments provide an objective measure of autistic symptoms though the scoring is not black and white. That is, the score provides a range or “probability” that the child has ASD, but it is certainly not definitive.
As I mentioned earlier in the article, there is no one test for autism and much of my diagnosis is based on my observations and impressions of the child as well as objective measures. Some parents have become upset by this and have remarked, “How could you diagnose my child with autism when you only spent about an hour with us?” All I can say is that I have years of experience and I have seen hundreds of autistic children, so I know what to look for. If a parent disagrees with a diagnosis it is certainly their right and responsibility to seek out a second opinion. What I often tell parents when I suspect this diagnosis is to research it themselves. There is a multitude of information on the internet, so I suggest that parents read about the various forms of autism and its symptoms, and see if the symptoms “fit” their child. People are often surprised when they begin reading about it and they might say, “That sounds just like my child.” It is my hope that when that occurs, parents will begin to accept the diagnosis and become more comfortable with it.
In conclusion, I hope that this article has been helpful and informative. I know that receiving a diagnosis of autism can be very upsetting and frightening. Therefore, the more a parent can learn about the diagnosis, the more they will feel empowered and hopeful that their child can be helped. Please stay tuned for a future article on what to do and where to turn after you have received a diagnosis of autism or Asperger’s.
About the Author:
Jeri Sebastian Ph.D. is a licensed clinical psychologist with over 10 years’ experience diagnosing autism. Jeri is a volunteer member on the BCASC Education Committee.
The Education Committee had successful endeavors in four key areas in 2010.
• Talks in the community
• Resource Tables at local events
• Parent Forum
• Conference Presentation
All our talks to the community were requests made of us for information. Requested topics ranged from general Autism information to specific information for Business groups and Job Coaches. The presentations our Coalition provides are unique in that they are given by two speakers, one is either a medical or education professional and the second is a parent. This ensures that all presentations have a dual perspective for the audience. It also reflects the Coalitions collaborative membership of parents, medical & education
professionals as well as community members. We have found this to be an important component in how we educate the community about ASD. Talks were presented to:
• Central Bucks Family YMCA Staff Training
• Kehilat HaNahar Synagogue
• CHOP Next Steps Workshop
• Camp Presentation
• General Autism Presentation
• Conference Presentations
This year we added a few new presentations that we plan to be held annually. The first was a series of two presentations at the 3rd Annual BCASC Autism Conference called “Navigating the System”. The first presentation focused on Diagnosis thru Middle School. We had a panel of Educators, Parents and representatives from Early Intervention lead this program. The second presentation focused on High School thru Adulthood. Our presenters consisted of a Parent of a Post-21 child with ASD, a Wrap Around Service provider and a School Transition Coordinator. We had over 30 total people attend these sessions. We also added a Camp presentation which was offered to all the local Day and Summer Camps in the area. This presentation was open to Camp Counselors and was held at the Bucks County Intermediate Unit in June. Approximately 26 people attended. In all, we reached over 100 people thru all our talks.
We had resource tables at several events in the Philadelphia area during the year. These events gave us an opportunity to have more one-on-one conversations with individuals. Committee members at these events discussed the goals of the BCASC and its desire for increasing Autism awareness in the Bucks County
Community. Brochures and business cards were distributed and families were encouraged to attend future meetings and events. A contact list was created of those interested in learning more about the BCASC and
the Committee members invited these individuals to consider joining the organization. Many expressed an interest, and to date, new members have joined to help our organization further its goal. We had tables at the following events:
• BCASC 3rd Annual Conference
• Bucks Intermediate Unit Resource Fair
• 11th Annual Autism Awareness Day @ Philadelphia Zoo
• BCASC Bridge Valley 5k/1 mile fun run
• Green Tree Partnerships conference
• 2nd Annual Peddler’s Village Community Days
• Walk Now for Autism Speaks
• Central Bucks West Girl’s Volleyball Autism Awareness Night
• 1st Annual Autism Expo for the Autism Cares Foundation