Earlier this week some friends of ours took us to an Open Doors Presentation. The topic was "What is Asperger's/High Functioning Autism". The presenter was a local representative from SELPA and gave the attendees a wonderful, welcoming evening. Many parents were there and shared where they were on their journey. Some had just received a diagnosis, some were suspecting that their child may have Asperger's, and some had "almost adult" children with the diagnosis.
The reason people found themselves at the presentation was different for everyone. Some were there because they had not found support in their families, communities, or even with their current medical circles. Some were there to learn more about the diagnosis and ways to help their children. Others were there to find companionship with others who were going through the same thing. Even others were there because they wanted to guide and help other parents who were just beginning the journey.
While I found the presentation wonderful, I also enjoyed watching the other parents become enlightened through the meeting. My husband and I have already hit the point where we realize that our son is going to be ok. He just learns in a different way. There is nothing "wrong" with him and he's not "stupid" or "unteachable". He just needs to be taught differently. The acceptance and realization of this really sets you free as a parent of someone on the spectrum. It is so important that as a parent you relax a bit and let your kid LIVE. Sure, there are going to be some tough days. Anyone who has been the parent of someone on the spectrum understands that BUT.... you have to realize how many wonderful days you have, what a blessing things kids are to your life.
For me, I hit this realization in February 2009 when I miscarried at 21 weeks. I didn't naturally go into labor, but when the baby stopped moving, I knew I wasn't pregnant anymore. I had to go into the hospital and be induced to deliver the baby. It was the most pro-life experience I ever had. Yes, it was tough. But, I learned how fragile life is, how big that baby was at only halfway through the pregnancy -- and yet so tiny---, and what a blessing each life is that we are entrusted with. My journey with my son changed at that moment. It was not the burden it had been the prior year. The questions of "is he" or "isn't he" went away. It didn't matter anymore what the label was.. he was my son and I was going to help him find his way. He was MY blessing.
For me, Open Doors didn't represent a support group to realize that my son is going to be ok. For me, this presentation made me realize what I needed to "gear up for battle" in the developmental struggles that will lie ahead. We touched on kissing, dating, the "sex" talk, masturbation, whether to tell your child about their diagnosis, and learned to laugh together. Being a parent of a child with special needs still involves parenting your child, but looking at it from a different perspective. As a parent, you know your child best and you can find the best way to help your child survive in this world. Your child is working really hard all the time and sometimes you need to remember that he/she is still a child. There are bad days with "typical" kids too. Our kids are put under a microscope and every behavior, word, utterance, and movement is studied and the diagnosis is to blame. However, we as parents need to realize that these kids work HARD, are smart, and may need to learn a bit differently from others, but they also need to be allowed to just be a kid.
Showing posts with label asperger syndrome. Show all posts
Showing posts with label asperger syndrome. Show all posts
Saturday, September 11, 2010
Thursday, October 30, 2008
Visit with Dr. Bauman & John's Diagnosis
On Tuesday, John, Bill and I visited Dr. Margaret Bauman, who is an Autistic Specialist in Child Neurology out of Massachusetts General Hospital. She works with Children's Services at Casa Colina and travels every quarter to visit. We had an hour-and-a-half appointment with her for a second opinion/diagnosis and next steps.
First of all, I want to say that it was a pleasure to talk to her. She does research into the causes of autism, as well as treating patients with Autism and has a good understanding of the development of children. She suggested so many things and gave us such a good analysis of the situation.
To see Dr. Bauman, an exetensive packet of information must be supplied that includes birth records, hospital records, any testing scores, analysis, or assesments, etc. She also met with John's teachers at Casa Colina and spoke to them about their observations. When Bill, John and I arrived, we went into an office with lots of toys to keep John occupied. (6 months ago, they wouldn't have kept his attention, but today, John was able to play most of the time without being re-directed. During the last half hour, he became more 'needy' of my attention and even started to do things like climb on the table and laugh after I told him to stop)
Dr. Bauman talked to Bill and I a long time, asking us questions about his development, behaviors, things we've noticed, therapies we've done, improvements we've made, etc. After our discussion, she gave us her assesment of John.
She believes that John has PDD-NOS. To understand this, let me break it down.
PDD is the category, which is Pervasive Developmental Disorder.
There are 5 disorders that fall under the PDD category. They include Autism, Asperger's, Rhett Syndrome, fragile X syndrome, and PDD-NOS.
In simple terms, the NOS, means Not Otherwise Specified, meaning that many symptoms are present that resemble those other 4 disorders, but not enough to receive a diagnosis.
Now, to make it clear, PDD is the autistic SPECTRUM, so all 5 of these diagnosis are on the spectrum, but to a varying degree, with PDD-NOS being the one that shows the least amount of symptoms.
There are a few things that she pointed out that are a cause for concern. A few that we talked about are:
- his lack of interest in people, limited eye contact
- his play skills (allows others to set the framework of play and then he 'learns' play, rather than naturally picks it up)
- his irregular sleep patterns
- sensory issues
- eating issues
In moving forward, she would like to find out WHY John is showing these symptoms and if other things are wrong. She is sending us to 3 other specialists to begin with.
1. a developmental optomitrist - She wants visual perception, visual tracking, and depth perception looked at. Not what he sees, but how he sees. This could lead to an explanation of limited eye contact or limited social interaction. (From PubMed.Com: The role of the optometrist in treating children experiencing learning disabilities embraces numerous areas beyond the customary optometric services. Etiological, diagnostic and therapeutic factors are discussed stressing visual functional disorders, perceptual-motor and developmental lags and cognitive style.)
2. a Gasteroentologist, which will test him for acid reflux, which could explain his poor sleeping patterns, resulting in tired, lazy, and poor concentration/attentive skills. She also wants them to confirm or rule out a lactose intolerence, so we know if we should keep him on or off dairy.
3. a Neuro Psychologist that would look at cognitive skills and agree/disagree with the diagnosis. A neuropsychologist is a psychologist who specializes in studying brain behavior relationships. Neuropsychologists have extensive training in the anatomy, physiology, and pathology of the nervous system. (Sensory issues & problems deal with the brain's inability to process the information correctly that the nervous system is sending it) This person can also be involved in the IEP (Individualized Education Plan) meetings with the School District. She can help to be an advocate for John's Educational Needs.
After seeing these 3 specialists, we will then re-visit Dr. Bauman in January.
The other thing that is recommended to do is at Casa Colina. We are getting a swallow test done with a speech pathologist. The teachers at Casa think he is aspirating while eating. (inhaling food/debris into the wind pipe or the lungs) This is caused by apraxia or low tone in the mouth. Basically, poor oral motor skills causing his muscles within his mouth to not work together while eating. (She also told the START teachers that we may want to consider a sleep study because if he is truly not sleeping well, it would explain many of the symptoms John shows during the day from lack of sleep.--although she didn't mention it to Bill & I)
Now, as far as moving forward with his "education", she gave us a bunch of advice. She says she does not want to see him in an autistic class or a class with kids who have behavioral problems because she believes John needs models in the classroom to teach him how to interact socially. She is afraid that it will hinder his development to "learn" by picking up on autistic behavior and not have a model that he can raise up to. She said that Katie has been John's best teacher and helps to structure his play.
So, she recommends that he be put in a preschool program that is "integrated" with children who are "normal" , as well as slightly delayed, but not with kids that have behavioral problems for fear he'd model the behavior. She wants him in the bottom or the middle, as far as skill set, but not at the top. She says other states have wonderful programs for this, but she doesn't think California has anything set up like this. She said that the integrated class would have 2 teachers and then a one-on-one aide for John to be guided back into participation if he wanders.
For me, Dr Bauman's words, diagnosis, and advice validated all the feelings that I have had --- some days feeling like it's "textbook autism" and then other days that seemed like the diagnosis was wrong. But, to be clear, the diagnosis was never wrong. 6 months ago John was a different kid. He had no speech, his cognitive level was very immature, he had no joint attention (ability to point out objects), etc. After understanding this disorder, the only diagnosis he should have received 6 months ago was autism. The fact that we are at PDD-NOS is an indication that early intervention is working, that Neurofeedback is working, and that with prayer, hope, hard work, and a battle plan, there is a chance for healing.
First of all, I want to say that it was a pleasure to talk to her. She does research into the causes of autism, as well as treating patients with Autism and has a good understanding of the development of children. She suggested so many things and gave us such a good analysis of the situation.
To see Dr. Bauman, an exetensive packet of information must be supplied that includes birth records, hospital records, any testing scores, analysis, or assesments, etc. She also met with John's teachers at Casa Colina and spoke to them about their observations. When Bill, John and I arrived, we went into an office with lots of toys to keep John occupied. (6 months ago, they wouldn't have kept his attention, but today, John was able to play most of the time without being re-directed. During the last half hour, he became more 'needy' of my attention and even started to do things like climb on the table and laugh after I told him to stop)
Dr. Bauman talked to Bill and I a long time, asking us questions about his development, behaviors, things we've noticed, therapies we've done, improvements we've made, etc. After our discussion, she gave us her assesment of John.
She believes that John has PDD-NOS. To understand this, let me break it down.
PDD is the category, which is Pervasive Developmental Disorder.
There are 5 disorders that fall under the PDD category. They include Autism, Asperger's, Rhett Syndrome, fragile X syndrome, and PDD-NOS.
In simple terms, the NOS, means Not Otherwise Specified, meaning that many symptoms are present that resemble those other 4 disorders, but not enough to receive a diagnosis.
Now, to make it clear, PDD is the autistic SPECTRUM, so all 5 of these diagnosis are on the spectrum, but to a varying degree, with PDD-NOS being the one that shows the least amount of symptoms.
There are a few things that she pointed out that are a cause for concern. A few that we talked about are:
- his lack of interest in people, limited eye contact
- his play skills (allows others to set the framework of play and then he 'learns' play, rather than naturally picks it up)
- his irregular sleep patterns
- sensory issues
- eating issues
In moving forward, she would like to find out WHY John is showing these symptoms and if other things are wrong. She is sending us to 3 other specialists to begin with.
1. a developmental optomitrist - She wants visual perception, visual tracking, and depth perception looked at. Not what he sees, but how he sees. This could lead to an explanation of limited eye contact or limited social interaction. (From PubMed.Com: The role of the optometrist in treating children experiencing learning disabilities embraces numerous areas beyond the customary optometric services. Etiological, diagnostic and therapeutic factors are discussed stressing visual functional disorders, perceptual-motor and developmental lags and cognitive style.)
2. a Gasteroentologist, which will test him for acid reflux, which could explain his poor sleeping patterns, resulting in tired, lazy, and poor concentration/attentive skills. She also wants them to confirm or rule out a lactose intolerence, so we know if we should keep him on or off dairy.
3. a Neuro Psychologist that would look at cognitive skills and agree/disagree with the diagnosis. A neuropsychologist is a psychologist who specializes in studying brain behavior relationships. Neuropsychologists have extensive training in the anatomy, physiology, and pathology of the nervous system. (Sensory issues & problems deal with the brain's inability to process the information correctly that the nervous system is sending it) This person can also be involved in the IEP (Individualized Education Plan) meetings with the School District. She can help to be an advocate for John's Educational Needs.
After seeing these 3 specialists, we will then re-visit Dr. Bauman in January.
The other thing that is recommended to do is at Casa Colina. We are getting a swallow test done with a speech pathologist. The teachers at Casa think he is aspirating while eating. (inhaling food/debris into the wind pipe or the lungs) This is caused by apraxia or low tone in the mouth. Basically, poor oral motor skills causing his muscles within his mouth to not work together while eating. (She also told the START teachers that we may want to consider a sleep study because if he is truly not sleeping well, it would explain many of the symptoms John shows during the day from lack of sleep.--although she didn't mention it to Bill & I)
Now, as far as moving forward with his "education", she gave us a bunch of advice. She says she does not want to see him in an autistic class or a class with kids who have behavioral problems because she believes John needs models in the classroom to teach him how to interact socially. She is afraid that it will hinder his development to "learn" by picking up on autistic behavior and not have a model that he can raise up to. She said that Katie has been John's best teacher and helps to structure his play.
So, she recommends that he be put in a preschool program that is "integrated" with children who are "normal" , as well as slightly delayed, but not with kids that have behavioral problems for fear he'd model the behavior. She wants him in the bottom or the middle, as far as skill set, but not at the top. She says other states have wonderful programs for this, but she doesn't think California has anything set up like this. She said that the integrated class would have 2 teachers and then a one-on-one aide for John to be guided back into participation if he wanders.
For me, Dr Bauman's words, diagnosis, and advice validated all the feelings that I have had --- some days feeling like it's "textbook autism" and then other days that seemed like the diagnosis was wrong. But, to be clear, the diagnosis was never wrong. 6 months ago John was a different kid. He had no speech, his cognitive level was very immature, he had no joint attention (ability to point out objects), etc. After understanding this disorder, the only diagnosis he should have received 6 months ago was autism. The fact that we are at PDD-NOS is an indication that early intervention is working, that Neurofeedback is working, and that with prayer, hope, hard work, and a battle plan, there is a chance for healing.
Thursday, August 14, 2008
Autism Speaks
I read an article on the Autism Speaks website that was very moving and made the 'autism' battle, the "autism" label, and the "autism" spectrum more understandable to me. It explains very well the 'large' spectrum and the terms thrown around.
I wanted to share this article with you today. Please take the time to read it through.
I wanted to share this article with you today. Please take the time to read it through.
Cure is Not a Four Letter Word
by Alison Singer
Alison Singer is senior vice president of Autism Speaks.
My daughter Lauren -- a typically developing child -- has a wonderful, dynamic friend named Haley, who has been diagnosed with Asperger Syndrome. While Haley is the best reader in the second grade and can argue circles around the school principal, it is gut-wrenching to watch her struggle in school every day. She cannot keep friends and is often all alone on the playground during recess. She is prone to violent outbursts and is generally unable to function in her classroom without one to one support. Sometimes the kids, and quite honestly her teacher, seem afraid of her.
Her mother suffers every day along with Haley, as she wards off the pressure to administer medications that might calm the unruly, disruptive behaviors, but might also extinguish the brilliant light that has helped Haley excel academically. Haley has a personality and a mind all her own; if she were she my daughter I would be similarly loathe to squash it. Haley needs a lot of support and understanding, but she doesn't need to be cured.
Lauren's older sister, Jodie, shares the same DSM-IV diagnosis as Haley, but Jodie has classic autism, which falls on the other end of the autism spectrum from Asperger Syndrome. While I have often marveled at Haley's rhetorical skills and quick wit, Jodie struggles to simply string two words together with any communicative intent. Many days it is hard to believe that the challenges Haley faces with regard to her Asperger Syndrome and those Jodie struggles with are related under the same DSM-IV diagnosis.
At one end of the autism spectrum we often find lower functioning persons like my daughter who cannot speak, have violent tantrums and can be self injurious, while at the other end we have persons who struggle with very significant, but very different, predominantly social issues.
Too wide a spectrum?
I'm sure a lot of thought went into the decision to include Asperger Syndrome as one of the autism spectrum disorders. On a scholarly level I understand that Asperger Syndrome is an expression of the extreme social deficits that characterize all those on the spectrum. Also, I am certainly glad that persons with Asperger Syndrome are becoming able to access support and services if they feel they need them.
But the “differing abilities” of persons with Asperger Syndrome are nothing like my daughter's autism. When we at Autism Speaks use the word cure, we are most often focused on the people at the lower end of the spectrum. I have not met a person with Asperger Syndrome who seemed anything like my daughter. None of these persons, however, has ever met my daughter because it is so hard to take her out of the house.
It is hard to consider her “differently abled” because she is not “abled”. She is sweet and loving and works harder than anyone I know, but she does not have any areas of strengths that I fear squashing through medication, intervention or cure. Without her medication, she cries almost constantly during the day and can't sleep at night. She has frequent seizures. She cannot tell me when she is in pain, or where it hurts. She puts everything in her mouth unless it is food. At age 9, her favorite game is still “this little piggy”.
Thankfully, recently she has learned to use words to name items she wants and needs, and this has dramatically reduced her violent tantrums. She has benefited greatly from behavioral therapy and from risperdal and depakote but she has a long long way to go. She has a neurological disorder that responds to antipsychotic medication.
Her pain is heartbreaking and I pray every day for a cure. I do not use the word cure to insult other people on the spectrum. I use it because it accurately conveys my hope that one day, her constant struggles will end and she will know a different, pain-free life.
Use of the word cure holds particular meaning to parents whose children suffer regressive autism. These parents I often feel suffer the most, as they had a glimpse of their children before autism. These parents seek a cure because they remember the child they had and want him back.
Autism Speaks' constituency tends to be dominated by parents of lower functioning children because many parents of children who are diagnosed as high functioning enough to be mainstreamed do not want to be associated with autism because of the stigma that is still attached to the disorder and for fear that their children will suffer from the label. Thus, our community does tend to be dominated by the faction of parents in search of a cure.
For this reason, much of our community struggles with the portrayal of basketball star Jason McElwain as the poster child for autism. My daughter can't carry on an impromptu conversation with the press the way Jason did. She can't make a basket. She can't throw the ball. She couldn't sit still to watch the Teen Choice Awards, and I daresay she'll probably never receive one. Jason is a hero for all he has accomplished, but the kids who struggle to learn to count, use a fork and say “I love you” are equally heroic.
Asperger Spectrum Disorder?
A good deal of the furor over the word cure may be the result of confusing “autism” with “autism spectrum disorder.” There are five diseases that fall under the autism spectrum disorder umbrella, one of which is autism.
One of the five, Rett's Syndrome, has its own advocacy community. The gene that triggers Rett's has been identified and yet the Retts community does not protest when we say we do not yet know the genes that trigger autism, because they are aware we are speaking of autism and not all of the autism spectrum disorders.
When Asperger Syndrome groups use the term “Asperger” it is clear what they are talking about. When autism organizations use the word autism it is often unclear whether we are talking about autism or the entire spectrum, including Asperger Syndrome. Most of the time, we are talking about autism.
But for whatever reason, all five disorders are placed together under one diagnosis because the similarities between them are greater than the differences. Perhaps we could take a lesson from other disease advocacy organizations. There are many different diseases that fall under the umbrella “cancer”, but no one argues that the intervention for leukemia should be the same as for brain cancer. No one says that bone marrow research is insulting because it doesn't serve the needs of persons with brain tumors.
Hope is not a four-letter word
At Autism Speaks, we are committed to bringing a voice to all who struggle with any type of autism spectrum disorder. Our goal is to do this by funding science that will find new treatments, and yes, ultimately, we hope, a cure for autism.
In fact, in our last round of grants, we funded several projects focused on Asperger Syndrome and high functioning autism. We appreciate that persons with Asperger Syndrome have different needs than persons with lower functioning autism but we all need more options and new opportunities.
Our hope is not to alienate but to unite in order to bring greater awareness of autism spectrum disorders to the public at large and thereby greatly increase public funding and private donations for treatment and research, increase access to services and reduce the stigma that is still associated with autism spectrum disorders. By shining a strong spotlight on autism spectrum disorders we can create a brighter future for all those who are affected.
Friday, August 8, 2008
Do I see it or do I not?
In follow up to the last blog regarding the Autism spectrum, I'd like to take the time to address the most asked question I get. Do I see John as Autistic?
To be perfectly honest, there are some days when I think, "yeah maybe they're right" and then other days when I feel that "autism" isn't John's problem. There are things about this syndrome that make it difficult to really determine whether John falls within it or not. The fact that "every child is different" and shows a varying degree of symptoms is one of those things. The other is that when John is around other children with it, parents of other children with Autism, therapists, etc., they often state to me that they are surprised with the autistic diagnosis so young and if "he really has it, it's mild".
Before I go on, I want to make it clear that I KNOW something is "not right" with John's development. He is significantly delayed in many areas and has behaviors that are not 'normal'. That is why I am learning all I can about all of the things that affect John, his behavior and his development. He has very scattered skills, with very low attention span, and is easily distracted.
The more I am reading (and writing) about SPD (Sensory Processing Disorder), the more I believe that John has sensory issues. Now, most autistic kids suffer from SPD as well, but not all kids with SPD are autistic, but the pattern of behaviors (including limited eye contact) are associated with SPD.
Now, I'm not saying John is not autistic, by any means. I'm just starting to realize what "at risk" behaviors truly are and why an early intervention program can help kids whether "at risk", autistic, or just developmentally delayed. The "label" of autism right now gets the help needed in the early intervention programs. At 3 years old, he will be re-tested through the school system to determine whether they believe he can continue through the public school system.
****Now, all of this leads me to my point. I will not "know for certain" if John is autistic or not, until a medical doctor, that is NOT tied into giving me some sort of funding or early intervention help, gives me that diagnosis. We are awaiting confirmation that John will be seeing an autistic specialist in October to give us a full evaluation. That diagnosis will be the one that will be the determining factor whether I have to fight for services (and what kind of services to fight for) or not. I am not going to let the school system tell me he isn't autistic or he no longer needs services. As his language develops and he gains certain skills through early intervention, it will become clear whether or not he is autistic, but someone who is granting or denying me service will not be the ones to give me that diagnosis.
Determining if John is/was eligible for Regional Center's services had a lot of contributing factors, including which Regional Center we got to go to. Some Regional Center's have more funding than others, for example. The first round is to pass an over the phone interview with the caregiver to determine if an evaluation should be done. I was told that every Mondays a committee meets to go through the calls from the week and determines which children can come in for a full evaluation. Two therapists hold the 2 1/2 hour evaluation and determine on the spot whether he qualifies for service or not. It was at that evaluation when they told me John was "at risk" for Autism and gave me the "now that your child is autistic" packet. The written evaluation came about 1-2 weeks later, stating that it was an "autistic disorder". That diagnosis qualified John for 25 hours a week of service, although we are not using that much at this time.
To sum it up, I'd like to answer the question by saying that the label John has right now doesn't matter to me. There is a reason why he qualified for service and that is because there is a significant developmental delay. I want to do everything I possibly can to help John progress. I want a medical doctor's second opinion because I don't want funding issues to interfere with his diagnosis. I also don't want the wrong label placed on John. As I am learning about disorders like SPD, I am discovering about different means of therapy. While classes like speech and early start pre-school teach John to do specific tasks to fit into a societal mold, occupational therapy helps to determine what it is that causes John to be delayed in those areas. It seeks to find the underlying cause and fix it through structured therapy. Right now, I'm fighting for the Occupation Therapy Evaluation that will determine if John would benefit from OT/SI therapy. Being pro-active and being involved in your children's therapy and "individualized service plan" (Regional Center's term) is what determines the success for your child. Finding the right 'label' is important in determining how to help.
To be perfectly honest, there are some days when I think, "yeah maybe they're right" and then other days when I feel that "autism" isn't John's problem. There are things about this syndrome that make it difficult to really determine whether John falls within it or not. The fact that "every child is different" and shows a varying degree of symptoms is one of those things. The other is that when John is around other children with it, parents of other children with Autism, therapists, etc., they often state to me that they are surprised with the autistic diagnosis so young and if "he really has it, it's mild".
Before I go on, I want to make it clear that I KNOW something is "not right" with John's development. He is significantly delayed in many areas and has behaviors that are not 'normal'. That is why I am learning all I can about all of the things that affect John, his behavior and his development. He has very scattered skills, with very low attention span, and is easily distracted.
The more I am reading (and writing) about SPD (Sensory Processing Disorder), the more I believe that John has sensory issues. Now, most autistic kids suffer from SPD as well, but not all kids with SPD are autistic, but the pattern of behaviors (including limited eye contact) are associated with SPD.
Now, I'm not saying John is not autistic, by any means. I'm just starting to realize what "at risk" behaviors truly are and why an early intervention program can help kids whether "at risk", autistic, or just developmentally delayed. The "label" of autism right now gets the help needed in the early intervention programs. At 3 years old, he will be re-tested through the school system to determine whether they believe he can continue through the public school system.
****Now, all of this leads me to my point. I will not "know for certain" if John is autistic or not, until a medical doctor, that is NOT tied into giving me some sort of funding or early intervention help, gives me that diagnosis. We are awaiting confirmation that John will be seeing an autistic specialist in October to give us a full evaluation. That diagnosis will be the one that will be the determining factor whether I have to fight for services (and what kind of services to fight for) or not. I am not going to let the school system tell me he isn't autistic or he no longer needs services. As his language develops and he gains certain skills through early intervention, it will become clear whether or not he is autistic, but someone who is granting or denying me service will not be the ones to give me that diagnosis.
Determining if John is/was eligible for Regional Center's services had a lot of contributing factors, including which Regional Center we got to go to. Some Regional Center's have more funding than others, for example. The first round is to pass an over the phone interview with the caregiver to determine if an evaluation should be done. I was told that every Mondays a committee meets to go through the calls from the week and determines which children can come in for a full evaluation. Two therapists hold the 2 1/2 hour evaluation and determine on the spot whether he qualifies for service or not. It was at that evaluation when they told me John was "at risk" for Autism and gave me the "now that your child is autistic" packet. The written evaluation came about 1-2 weeks later, stating that it was an "autistic disorder". That diagnosis qualified John for 25 hours a week of service, although we are not using that much at this time.
To sum it up, I'd like to answer the question by saying that the label John has right now doesn't matter to me. There is a reason why he qualified for service and that is because there is a significant developmental delay. I want to do everything I possibly can to help John progress. I want a medical doctor's second opinion because I don't want funding issues to interfere with his diagnosis. I also don't want the wrong label placed on John. As I am learning about disorders like SPD, I am discovering about different means of therapy. While classes like speech and early start pre-school teach John to do specific tasks to fit into a societal mold, occupational therapy helps to determine what it is that causes John to be delayed in those areas. It seeks to find the underlying cause and fix it through structured therapy. Right now, I'm fighting for the Occupation Therapy Evaluation that will determine if John would benefit from OT/SI therapy. Being pro-active and being involved in your children's therapy and "individualized service plan" (Regional Center's term) is what determines the success for your child. Finding the right 'label' is important in determining how to help.
The Autism Spectrum
Autism is a disorder of the brain that happens while child is still growing. It is a developmental disorder because it affects how a child develops. Autism is a syndrome and not a disease. It's not a case of "having it" or "not having" it. There are varying degrees of autism and the different "kinds" of autism appear on what is known as the "autism spectrum".
According to "What is Autism", handed out by the California Regional Center, the 'autism spectrum disorders' are as follows:
Autistic Disorder: Children with this kind of autism have all the behaviors of autism. This kind of autism is also called "classic autism"
Asperger Syndrome: Children with this kind of autism often have good language skills and high intelligence, but they may have problems relating to others and may have only very specific interests.
Pervasice Developmental Disorder- Not Otherwise Specified (PDD-NOS): Children with this kind of autism have some behaviors of autism but not all. Many children with this have fewer difficulties than those with classic autism.
John on the Autistic Spectrum
According to John's evaluation done by Regional Center, they list that "this pattern of developmental challenges meets the criteria for a diagnosis of Autistic Disorder". John does NOT have good language skills, as that was the main reason I took him in, so a diagnosis of Asperger Syndrome would not have been given at the time.
However, they also recommended a re-testing "after he has had sufficient time to benefit from educational services, and when cognitive abilities can be more reliably determined".
According to "What is Autism", handed out by the California Regional Center, the 'autism spectrum disorders' are as follows:
Autistic Disorder: Children with this kind of autism have all the behaviors of autism. This kind of autism is also called "classic autism"
Asperger Syndrome: Children with this kind of autism often have good language skills and high intelligence, but they may have problems relating to others and may have only very specific interests.
Pervasice Developmental Disorder- Not Otherwise Specified (PDD-NOS): Children with this kind of autism have some behaviors of autism but not all. Many children with this have fewer difficulties than those with classic autism.
John on the Autistic Spectrum
According to John's evaluation done by Regional Center, they list that "this pattern of developmental challenges meets the criteria for a diagnosis of Autistic Disorder". John does NOT have good language skills, as that was the main reason I took him in, so a diagnosis of Asperger Syndrome would not have been given at the time.
However, they also recommended a re-testing "after he has had sufficient time to benefit from educational services, and when cognitive abilities can be more reliably determined".
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