NeuroPsych Evalutation Report

We received the evaluation report from Dr. Seibert regarding John's evaluation from Feb-April.
At the time of this test, John is considered 3 years, 2 months old.
Listed below are some of the highlights from the 12 page report:

Areas of concern defined by parents:
1.He needs to be taught certain things that other kids seem to pick up naturally
2. Demonstrates some echolalia (repeats the ends of some questions when asked)
3. Preoccupations with narrow areas of interest and focus (in phases)
examples: clocks, lining up cars, left-turn arrows, train tracks,& reading clothing tags
4. Frustration tantrums -- problems managing anger
5. Craves sensory stimuli (specifically with hands/touch, chew non-food items)
6. Trouble with eating (messy eater, prefers to use hands, overstuffs mouth)

Areas of concern Socially:
1. Limited eye contact
2. Unable to show comfort to others in distress
3. Some pretend play
4. mostly parallel play

Areas of Concern defined by Current Teachers:
1. Little Attention Span
2. Easily Destracted
3. Limited Spontaneous Speech
4. Limited to no interaction with other children
5. Loves sensory activities (finger painting, eating with hands, feet in sand)
6. Limited interest in classroom when given free time (lines up cars or 'reads' a book)
7. Delayed academically
8. No eye contact

Things the teachers did not notice:
1. No strange or odd preoccupations
2. No behavior problems
3. No transition tantrums

Observation In the Clinic over 2 observation days:
1. No tantrums or upsets
2. mild mannered
3. Reduced eye contact
4.quiet most of the time, with only one-word utterances
5. Poor intelligibility of speech
6. Fairly distractible, but was able to maintain focus if sitting on lap, bounced, or squeezed

Observation at School:
1. John did not remain on carpet square during storytime and had to sit on teacher's lap to maintain focus
2. Wandered room
3. Responded to yes/no questions
4. Kids lined up to wash hands, John consistently wandered out of line; needed re-direction
5. Food placed in front of him, told to wait, kept putting hands in spaghetti; needed to be reminded to wait multiple times
6. Facial expression blunted most of the time
7. Complied with verbal instruction but never made eye contact; appeared not to be paying attention, but would respond appropriately
8. Messiest eater in the class
9. After lunch, wandered over to line up cars
10. Wandered to book area, opened book, sat down, and "read" it
11. On playground, rode tricycle alone most of the time
12. Smiled at girl who climbed on "caboose" of tricycle
13. Stopped bike purposely to have 2 other girls crash into him; all giggled; John repeated again
14. Gravitated to outskirts of playground most of time
15. Seemed to be "in his own world"

ADOS test (Austim Diagnostic observation Schedule):
1. John responded to name by turning toward examiner
2. Poor eye contact; used eye contact to get the examiner to do something again
3. Showed some shared enjoyment with examiner, but not consistent; interested mostly in having sole control over a toy; needed to be re-engaged to play with examiner
4. Did not spontaneously give objects to examiner; but would comply after repeated requests
5. Could show functional use of toys when prompted but did not demonstrate any symbolic play on own
6. Did not initiate any social interactions, but did not mind the examiner playing alongside him
7. Produced single word utterances, most not intelligible
8. Showed only occasional, unusaual sensory behavior -- objects in mouth
9. According to ADOS, fell within the spectrum, but not autism, per se

GARS test completed by parents scored an 81 -- meaning "possibly" has autism

Other Tests Administered:

• DAS-II - Differential Ability Scales - Verbal & Non-Verbal Cognitive Development; John scored in the 66th percentile for Verbal Comprehension (average) and 58th percentile for Naming Vocabulary (also average); For the Non_verbal section, he scored in the average for Picture Similarities, but scored mildly impaired on Pattern Contruction; His total scores for this test was a 96, and fell within the average range (39th percentile)
• Although the examiner felt that the scores need to take in account that John had a very low attention span, needed frequent re-direction to the tasks at hand, cues to remind him to persist in his effort, prompting to consider the full range of answer chocies before responding, etc.
• PLS-4 - PreSchool Language Scale - measures comprehension and expressive language skills; John's auditory comprehension scored of that of a 2-year 11 month old child (average range for his age) Most advanced skills he showed was the ability to distinguish activities that were day from activities at night. He could understand picture analogies, identified objects, identified colors and common activities, understood quantitive concepts (one vs. all), and descriptive concepts (big vs. small) Could follow 2 step commands, but COULD NOT show spatial concepts (on, off, in, out of), pronouns (I, me, you) or negatives (show me the baby that is not crying) His scores resulted in that of a 2-year 8 month old, which is on the low average for his age range.
• VABS-II - Vineland Adaptive Behavior Scale - questionnaire filled out by parents; day-to-day functioning;
  
• Communication scored low at 1 year 11 months;
  
• Expressive Language scored at 2 years, 10 months;
  
• Written Language was HIGH at 4 years, 3 months - able to recognize upper and lowercase alphabet, own written name in printed form;
  
• Daily Living Skills ---
  
• Personal Care-2 years 9 months,
  
• Domestic Care - 2 years, 2 months;
  
• Community Functioining HIGH at 4 years 5 months
  
• SOCIAL skills - low at 1 year, 7 months;
  
• Play behaviors -1 year, 10 months
• Coping - 2 years, 7 months
• Fine Motor - 3 years, 5 months

DIAGNOSTIC IMPRESSIONS:

• Basic Language skills have caught up to low average-average range, he still shows delays in speech intelligibility, as well as in pragmatic use of language in social/communicative ways
• Delays in age-appropriate social and play behaviors
• Shows some atypical restricted and repetitive behaviors
• Falls short of Autism Diagnosis at this time
• However, meets criteria for PDD-NOS, Pervasive Developmental Delay, Not Otherwise Specified, otherwise known as "atypical autism"
• He has shown signs that intervention boosts his progress

RECOMMENDATIONS:
1. Parents should request an IEP (Individulaized Educational Plan) from Bonita Unified School District based on this second opinion requesting:

• Placement in a classroom with a better teacher-to-student ratio than a typical educational classroom; Should have curriculum appropriate for average-range overall intellectual level, but with resources that meets his needs for supervision, assistance, difficulties for sustained attention, and facilitation for social activities OR in a regular classroom with a one-on-one aide
• John clearly needs speech therapy to address intelligibility and language pragmatics
• John should receive an OT evaluation to address sensory issues and motor skills concerns

2. Parents should re-apply through regional center for services that may benefit them in the community based programs
3. Parents should seek additional play and social opportunities and instruction for John with peers close in age; John needs facilitation to initiate and sustain engagement with other children and verbal cues to help him play
4. Seek parent education and support services

Articles on Autism & A Poem

I have some current news articles on autism.

Here is a USA Today article that talk about how some kids with autism can recover and become undiagnosed.

Here is an article from Time on a genetic clue that may eventually explain why autism affects boys rather than girls.

I also found a poem that touched me. Read below.

Walk With Me

Walk in my shoes
for one single day.
Then you'll see why
I need to pray.
Come live in my home
for a week or two
and then remember
I am just like you.
I didnt ask for the things I was given
I didnt choose this road I have taken
Walk a mile with me hand in hand
Then perhaps you will understand.

I'm not really complaining
about the stress in my life,
I know that we all have
some toil and some strife.
But walk with me, when you think
I am wrong, walk with me
and you'll start to belong.
Embrace my sorrows,
like they are your own,
And then you will know me
And see I have grown.

The journey I take
is different from yours
My life took one of those
unexpected detours,
But this road that I travel
is not really so long,
If the people who watch me
will join in my song.
Listen to my footsteps
and watch how I dance
And then you will know me
and give me a chance.

Take heart and remember
It can happen to you,
who knows where my pathway
will cross over to you?
So speak to me softly
if you can't understand
Remember I once stood
right there where you stand.
And walk with me gently
when the day is at end.
And then I will know
I can call you my friend.

copyright 1999
Sally Meyer

Neuro-Psych Evaluation

To bring everybody up-to-date:
John was diagnosed as "at risk" for autism at 30 months old by Regional Center
When he turned 3, he was evaluated by the school district, who said they do not see a developmental delay or signs of autism that impact education and denied any special educational services.
Regional Center then told us that since he had "provisional" or "at risk" autism to begin with, there never was a diagnosis in the first place.

SO --- we are going through a medical doctor, a neuro-psych to find out if John needs a diagnosis or not. Both Regional Center and the school district determine funding, so we thought we needed another opinion by someone who had nothing to do with funding.

The assessment will consist of parent and teacher questionnaires and interviews, as well as a few days of evaluation of John in different settings and at school, with other kids. We've had 2 sessions already and am looking forward to her assessment.

Bad Days

Wow! I can't believe how long since I've written on here. Therapy appointments, a new Facebook addiction, and the holiday season have kept me from updating this page.

I have been concentrating on John's progress and the success's we have had since beginning early intervention. ( see 2 posts below for John's progress under "Neurofeedback Testimonial" ) Today, I want to take the time to talk about the struggles we have in raising a child with Autism. Since beginning early intervention, we have had extreme highs and dramatic lows.

A few days ago John had 3 meltdowns in the afternoon. These are not temper tantrums, but emotional meltdowns. Many times with autistic children, if anything is slightly 'off', if they feel sick, or they are having trouble figuring out their emotional state, they have these meltdowns.

For John, it began at naptime the other day. It's the kind of meltdown where the tears won't stop, you can't console the child, he can get hysterical, the cries turn to screams, and there is no apparent reason why he is upset. He appears uncomfortable, constantly moving and wriggling. Holding him is almost impossible because he doesn't want to be comforted. Talking to him makes the screams get louder. Rocking him makes him irritable. Time only makes the rage worse. As a parent, you go through a wide range of emotions during the meltdown. It starts with compassion and a sense of wanting to calm him down. Frustration creeps in as the meltdown continues. As his anger builds and you try everything to calm him down, your anger builds, as you try to remind yourself that getting upset is not going to help this situation. At some point, I begin to wonder what kind of impact episodes like this has on Katie, who is laying in her bed, one bedroom away, trying to take her nap. The next emotion you feel is failure and somtimes you begin crying with him, wondering why he has to be this way.

A few days ago, the first meltdown ended 40 minutes later when he became so tired and just fell asleep. He slept for an hour, while I re-charged for round two. The second he woke up, he picked up from where he left off. This time I couldn't stick with it. I called my mom, frustrated and felt like I just didn't know what to do. I had him on the lounge chair with a blanket, with his shirt off. He ripped it off at some point and wouldn't let me put another one on. I think restraining him would have been the only way to get the shirt on, but I had no energy for that battle and decided that if he wanted his shirt off, he knew better than me on this one. He wanted to bury his head in my shoulder and cry. He kept sobbing and wanted to pinch me under the armpits. His hand kept making its way into my shirt and I kept taking it out, which infuriated him, but I wasn't going to let him hurt me. I kept thinking to myself that this kid is only 3 years old and I'm the adult. My mom stopped by and when the door opened, he stopped crying and just looked at her. She walked in and said one word and the crying continued. She offered to hold him and he screamed "mama" and wouldn't let go of me. After another 15 minutes, he fell asleep on lap while my mom and I were talking. She left and I let him sleep on me for a half an hour and then I rolled him onto the couch. He stayed there for 2 hours. He never sleeps that long in the daytime, but he wore himself out.

When he woke up, he wasn't very happy and cried a little bit more. This time I had reinforcement --- Bill had come home from work. He responds better to Bill at times --- I think John gives me the worst of it. He wouldn't eat dinner, but we had to go out. Putting him in the car and eventually stopping at McDonalds changed his mood and he slept well that night.

Episodes like this are becoming a lot less frequent. In fact, we haven't had one of these in a very long time. But, it reminds me of where we came from. As a baby and up until last year, John had these episodes almost every day at 3 or 4 o'clock. I never knew what was wrong. I blamed milk, gas, his stomach, maybe he was sick, etc., but sometimes I don't even think these kids know what is wrong. It reminds me of where we've been and although we've made tons of progress, it also reminds me of what we are dealing with. Prayer, tears, friends, family, Bill's support, and my mother are getting me through this. Now, my prayer is strength to deal with the third child that is on it's way....

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.

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.

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.

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.

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".

Autism

I thought I'd take the time in today's blog to concentrate on Autism, the diagnosis John has received.

Autism (defined here by regional center) is a developmental disorder defined as a syndrome causing significant and sustained impairment in social interaction and communication, with restricted and stereotypic patterns of interests, behavior, and activities which appear before age three. Since Autism is a syndrome, all people who have the disorder will not have all of the different behaviors associated with the disorder. Autism is a lifelong disability.

Children with autism are slow developing self-care, communication, social or learning skills. These skills are often uneven, having good skills in one area and poor skills in another. The person will have limitations in understanding words and ideas, and may be inappropriate responses in sight, hearing, touch, pain or balance. Relationships with people and objects may be abnormal.


Here are a list of behaviors that are Characteristic of Autistic Children: (though a child may not show all of these, showing a significant amount of them could lead to a diagnosis of an Autistic Disorder)

• Difficulty expressing needs; severe language deficits
• difficulty mixing with other children (parallel play)
  
• Repeats words or phrases in place of normal responsive language
• Acts deaf at times. Tests in normal range of hearing, but not always responsive to verbal cues (doesn't respond to name when called, for example)
• Resists learning
• No fear or danger
• Resists change in routine
• Indicates needs through gesture (may lead adult by the hand, instead of pointing)
• inappropriate laughing
• resists cuddling
• physical over activity
• avoids eye contact
• inappropriate attachment to objects
• spins objects
• sustained odd play
• standoffish manner
• uneven gross/fine motor skills
• laugh, cries, or shows distress for no apparent reason
• unresponsive to normal teaching methods

John's Autistic Characteristics
I took John in for a speech delay, but had also noticed these things:

• would make eye contact for only brief periods of time - nothing sustained
• Abnormal behavior of touch (wanting his hands in my mouth or armpits all the time)
• Difficult time with pointing out objects
• Communication issues (would lead my hand to what he wanted)
• Scattered skills (on a development chart he would have some advanced skills and lack basic skills like stacking blocks)
• Didn't always respond to his name when called
• always in constant movement

I did not notice: problems with cuddling, social skills, interacting with other kids (although he did not have a lot of opportunity), spinning objects, odd play, inappropriate laughing, attachments to objects, etc.

Characteristics seen in his evaluation

• tip toe walk
• "W" sit on the floor
• did not respond to his name
• reduced eye contact
• low joint attention (ability to point or look at an object one is directed to)
• Could representational play (imaginary play -- pick up a phone and say hello)
• short attention span
• Difficulty with imitation (this one surprised me because at home,he imitates everything Katie does)
• Could hold crayon appropriately
• Completed peg board quickly in only 25 seconds
• Could retrieve hidden toys quickly
• Easily distracted
• Could follow directions in imaginary play (feed the baby, put the baby to bed)
• needed to be reminded to "watch where he was going"
• words used were not recognizable
• Difficulty in sensory processing
• preference for mother
• engaged in non-functional activity (turning lights on and off repeatedly)

The areas of concern were:
Social Skills : Tested at a 10-17 month level (he was 30 months the day of the test)
Language Skills: tested at a 6-9 month level
Problem Solving: tested at a 21 month level

An "area of concern" is determined when a child tests at 1/3 his age in any category. He was 30 months old when he was tested. Any category where he tested at 20 months or lower was labeled an "area of concern".

The pattern of development shows "at risk" behaviors for an Autistic Disorder. At this time, he has not been "officially" diagnosed with Autism. The pattern meets the criteria for an Autistic Spectrum Disorder. Early Intervention was recommended, as well as a re-test when John is 4 or 5. We are also going to be seeing an Autistic Specialist in October for a second opinion.

John's Diagnosis

The motivation for writing this blog is my son, John. He will be 3 in November. Two months ago, he was diagnosed by Regional Center with an Autistic Disorder. His "at risk" behaviors has led them to recommending an early intervention program.

I took him in for an evaluation due to a speech delay. By 2 years old, he hadn't turned his baby babble into understandable words. He had only 2 words that were close to the correct pronunciation -- and those were not "mommy" and "daddy". He could say 'mulk' for "milk" and "butter"!!! Mommy was "baugh-in". He just couldn't move his mouth the right way to get words out. He had created his own language for things and couldn't figure out why we couldn't understand him. Temper tantrums came from frustration and life was very difficult for all of us.

John was a high maintenance baby. He is and always has been "on the go". He is in constant movement, rarely at rest, often irritable, had times when he cry inconsolably, and had poor sleep habits. From the time he was born, he was waking up 5-8 times a night. Every 45 minutes to an hour, he was usually waking up. I nursed him until ten months old and went straight to a sippy cup with milk, skipping the bottle. The milk became a security blanket for him. He'd ask for milk all the time, sometimes foregoing meals to drink milk. If he was tired, upset, or hungry, he wanted milk, and I gave it to him. By 2 years old, he was drinking between 24-36 ounces of milk a day! I had suspected milk allergies and was switching to lactose free and lowering his quantities daily. When he was tested at Regional Center and we were given the diagnosis of Autism, I decided to pull him off of milk completely. That night, we got our first full night of sleep! From that night on, he slept through the night. Life was about to change! His ability to function during the day increased with sleep. I got sleep, which helped me function better in the day!

Regional Center's findings surprised me at first, but I wanted to help John. My mind was all over the place. If I need to place a label on my child to get him help, then there will be a label on him. But, what other effects do labels have on our kids? At what point do we ask ourselves, “slightly autistic or typical boy behavior?” Is Autism the buzz word for the next 5 years? Are kids that don’t fit into a box labeled “autistic”? But, at the same time, we need to get our kids help if they need it. How do we tell if the clinical stuff is right?

The answer is simple. Be a mother. Be there for your child. Know your child. Be cautious, but listen. Fight your child’s battles. Fight for your child. Do everything you can do that helps your child. Not all advice is worth taking. Weed it out. Find out what works for your family and your child’s needs. Pray for your child. Pray with your child. I’m just starting this journey, but to ignore that journey would not benefit John. I'm going to be a pro-active parent and get John the help he needs.