Speech Delay: Pre-Diagnosis

This is a video of Bradley at Christmas time 2010. Bradley was about 2 years, 9 months. I have included a transcript at the bottom of this post. Watch the video first and see if you can understand what Bradley is saying. Then check out the transcript to see what I now know Bradley was saying. The audio volume is very weak, so you'll need to turn your volume up pretty loud and/or use headphones. If I can figure out how to edit the original movie to enhance the sound I'll re-post with improved sound quality.

"He's not autistic. He just has a speech delay." That's what I remember telling myself and others countless times prior to Bradley's PDD-NOS diagnosis at age 3.  At times I even had a hard time admitting Bradley had a speech delay. I was a talkative child... and I'm a talkative adult. I was an award winning speaker in high school- winning state medals in both cross-examination debate and informative extemporaneous speaking. As a psychology instructor, I speak for a living.  How could my child have a speech delay?  My mother-in-law told me that my husband had a speech delay as a child and didn't consistently use effective, understandable speech until he was two or three. This was comforting to me, but the longer the "speech delay" went on, the more I realized Bradley was falling behind his peers with his speech.

I remember Bradley saying "Momma" and "Dada" before he was one year old. He cooed (produced "aaahhh" and "ooohhh" sounds) as a baby within the average developmental time frame. I think he did a little babbling (vowel-consonant sounds like babababa), but now I realize it was not as much as my younger son babbled. After his first birthday Bradley wasn't adding many new words to his speaking vocabulary. I didn't worry at first, because I knew boys are sometimes slower in adding to their vocabulary than girls.  A few more months went by and at 17 months Bradley entered public daycare in August 2009.  At first Bradley didn't seem significantly behind his peers in the daycare class, but by Christmas time the daycare director suggested I allow an Early Childhood Intervention (ECI) diagnostician assess Bradley's speech.  It hurts to hear someone tell you they think your child is not developing appropriately... really hurts.  I know the suggestion for assessment was made because the daycare director cared for my child. I know that early intervention is the best treatment for just about any and EVERY physical and psychological concern.  Diagnosticians know the benefits of early intervention, but they don't know the hurt.

After an assessment with ECI, Bradley was recommended to participate in speech therapy treatment and began receiving services.  I don't remember the frequency of his initial speech therapy, but I think it was one 30 minute session per week.  Bradley's first speech therapist was a woman named Kori. She was very energetic, nice, and positive. Kori gave me a lot of hope and Bradley seemed to like her.  However, I didn't think I was learning how I could help Bradley.  I guess I was expecting to have a pragmatic treatment plan for me to follow.  Bradley participated in the ECI speech therapy, but I wasn't seeing significant improvement in his speech.  I don't know if my expectations of improvement were too high, but I grew rather impatient with the quality of speech therapy (specifically about the lack of resources and direction given to me as the parent).  While Bradley's two and a half year old class mates were now speaking in sentences and carrying on conversations with their parents, we were getting only 1-2 words at a time with lots of unintelligible talk. Bradley also had excessive saliva that would dribble down his mouth. We would notice this excessive saliva pretty consistently- almost on a daily basis. Meanwhile- speech therapy included blowing bubbles and playing with whistles, and I was growing impatient.

Video Transcript
Mom: Jingle Bells. Jingle Bells. Jingle all the way. Oh what fun it is to ride in a one horse open sleigh.
Bradley: Hey
Mom: Hey- What does Santa Claus say?
Bradley: Clan Saus say (Santa Claus say)
Mom: Ho ho ho
Bradley: Ho Ho. Chris (Ho Ho. Merry Christmas)
Mom: Ho Ho Ho.
Bradley: May mis (Merry Christmas)
Mom: M&Ms??? (at the time I thought he was saying M&Ms)
Bradley: M&Ms
Mom: Can you say Jingle Bells?
Bradley: Ho Ho. Tick a tick. Tick a tick. Tick a tick (Bradley would frequently say "tick a tick" or something along that lines rather than meaningful speech)
Mom: Sing Jingle Bells
Bradley: Tick a tick. Tick a tick. Tick AHH. Tick a tick! (I think he was trying to sing Jingle Bells)
Mom: Jingle Bells. Jingle Bells. Somebody's here. Say, "Who is it?"
Bradley: (whispers) Who's it
Mom: Who is it?
Bradley: Dada
Mom: You think that's Daddy? Let's see. Who is it?
Dad walks in...

Emotional Stages of Diagnosis

Hindsight is 20/20. Every adult knows this. I definitely realize today that I have had multiple responses and reactions to Bradley's PDD-NOS diagnosis.  The passage of time, personal reflection, and consultation with Bradley's service providers has led me to realize that many parents will go through a cycle of emotions when their special needs child receives their diagnosis.  When talking with others I've compared my emotional experience to the stages of grief.  While I'm going to make a comparison between the two, I want to emphasize that having a child with special needs is not something I want to grieve. I hope after reading my rationale you feel the same.

As an instructor of psychology, I teach my students about The 5 Stages of Grief. This model, also called "The Grief Cycle," was developed by Swiss Psychiatrist, Elisabeth Kubler-Ross.  Dr. Kubler-Ross emphasized that the grief cycle is a model or framework. She noted that not every individual will experience all 5 stages the same, in the same order, or with the same intensity. Kubler-Ross also explained that some grieving individuals may revisit the same stage more than once or may not experience one or more stages at all.  The purpose of her model was to help grieving individuals learn that healing DOES take time and that it is a normal, human reaction to respond differently to different types of grief.  Dr. Kubler-Ross emphasized that grieving is an individual journey that will help the individual move closer toward acceptance and hopefully learn to effectively cope with their grief (Kubler-Ross Foundation, 2009).

For more information about Dr. Kubler-Ross' research and Grief Cycle model check out: http://www.ekrfoundation.org/five-stages-of-grief/

Bradley was diagnosed with PDD-NOS at age 3, and within that first year post-diagnosis I went through many stages that are similar to Kubler-Ross' Grief Cycle. Below I have explained the basic concept of Kubler-Ross' stages and how I saw it manifest in my life.

Denial	"Denial is a conscious or unconscious refusal to accept facts, information, reality, etc., relating to the situation concerned. It’s a defense mechanism and perfectly natural." Prior to his PDD-NOS diagnosis I knew that Bradley had a "speech delay," but I was confident he did not have autism. I remember a few family members asking if Bradley was autistic and my swift response was "No Way!" Even during the assessment and eventually diagnostic process, I thought that the assessment team was hasty in their diagnosis. I knew Bradley had a speech delay and I was confident once he overcame that he would be just like any other kid.
Anger	"Anger can manifest in different ways. People dealing with emotional upset can be angry with themselves, and/or with others, especially those close to them. Knowing this helps keep detached and non-judgmental when experiencing the anger of someone who is very upset."  My anger was secretive anger I had toward other parents. I internally fumed when I observed the lack of effort and bad attitudes of a few parents of healthy, high functioning, amazing, "non-autistic" kids. I'd see these parents in public- ignoring their child, belittling their child, pressuring them to be better... and I wanted to scream, "Be thankful for your kid and pay attention to them! Love them! You have it easy. Quit complaining!!!"  Some of these parents were strangers and some I knew very well. It frustrated me greatly that (In my mind) they tried so little yet had smart, social, talkative, amazing children. I thought I was working 10x as hard as them and just didn't think it was fair. I was also angry and rude with Bradley's assessment team. Many times I either directly or indirectly let them know that they were wrong about Bradley and they didn't know him well enough to diagnose him with PDD-NOS. I thought, "How dare they define my child by a diagnosis!!! They just met him!"  I feel horrible about being so rude and have apologized to the team members I was rude to. What I didn't realize is that we both wanted the same things- for Bradley to be successful in school and in life. Parents- keep in mind that a diagnosis leads to treatment. It leads to help and understanding.
Bargaining	"Traditionally the bargaining stage for people involves attempting to bargain with God. When people bargain, they seek to negotiate a compromise." I bargained with God many times. "God- I will spend more time with Bradley. I will be a better mother. I will try harder. PLEASE take away his autism." This is a prayer I said MANY times. I'll blog about the role God has had in my acceptance of Bradley's diagnosis and what it took for me to understand His Plan.
Depression	"It’s natural to feel sadness and regret, fear, uncertainty, etc. It shows that the person has at least begun to accept the reality." I felt incredibly depressed and helpless after the first ARD. I walked away feeling broken after an hour and a half of listening to people tell me about what my child couldn't do, what he may never be able to do, and how much work it would take to integrate Bradley into mainstream classroom education. The thought that Bradley may never meet those dreams I had for him (playing football, academic events, going to college) saddened me tremendously.
Acceptance	Acceptance means coming to terms with the diagnosis, believing the diagnosis, and being "okay" with it.  Thanks to research, supportive friends and family, and the grace of God, I finally reached acceptance about a year after the initial PDD-NOS diagnosis.  I was energized to do EVERYTHING in my power to help Bradley become successful in the classroom and in life. Today I believe I continue to primarily stay within the acceptance stage, but there are certainly times (usually just brief moments of a day) that I find myself slipping back into a previous emotion. One clarification though- I accept and embrace that Bradley is a wonderfully made child, who also happens to have high functioning autism. I will never accept that he is a high functioning autistic child that happens to be named Bradley.  Parents- acceptance does not mean we have given up hope on our dreams for our child. It means that we have accepted that God's will and His dreams for our child are better than we could have planned on our own.

Jeremiah 29:11-13 "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart."

“There are no mistakes, no coincidences, all events are blessings given to us to learn from.”

-Elisabeth Kubler-Ross

The pictures below are of Bradley on his 2nd birthday and his 3rd birthday- both spent at the Houston Zoo

Autism Symptoms Explained

As a Licensed Professional Counselor in Texas, I knew about autism before Bradley was diagnosed. Well.., I thought I knew about autism. I was a practicing therapist (and continue to maintain my LPC license), however I had primarily worked with juvenile delinquents and the elderly.  My youngest client had been 10 years old, so my first experience working with very young children was when I began working with my own child.  As an instructor of psychology, I knew enough about autism. Again- I thought I did. I read material in my pediatrician's office and knew that the three basic early detection signs were: "1. My child looks at objects that I point at. 2. My child points at interesting things and 3. My child make believe plays." Yes. Yes. Yes. But I didn't understand the more comprehensive symptoms.

The Diagnostic & Statistical Manual of Mental Disorders, 4th Edition, Text Revision (DSM-IV, TR, 2006) is a clinical book that helps therapists, psychologists, doctors, and other mental health professionals (who are trained to diagnose clients) effectively diagnose clinically recognized disorders.  The DSM-IV, TR defines Pervasive Developmental Disorders (PDDs) as disorders, "characterized by severe and pervasive impairment in several areas of development: reciprocal social interacion skills, communication skills, or the presence of stereotyped behavior, interests, and activities." Furthermore, the DSM-IV, TR notes that these impairments are "distinctly deviant for the individual's developmental level or mental age."  In the case of children with PDDs, the child exhibits symptoms that are clinically considered abnormal compared to other children their actual age or mental age (meaning that diagnosticians have considered projected IQ and intellectual deficits if they are present). Different types of PDDs include: Autistic Disorder, Rett's Disorder, Childhood Disintegrative Disorder, Asperger's Disorder, and Pervasive Developmental Disorder Not Otherwise Specified.

The following symptoms for Autistic Disorder are from the DSM-IV, TR (2006).  At the time of this blog post, the DSM has released the 5th edition that includes modification to autism diagnostic criteria.  I will address these changes in an upcoming blog.

*Notice that a specific number of criteria from specific letters must be identified to receive the diagnosis.   **I have included my commentary behind the symptoms.

Autistic Disorder
I. A total of six (or more) items from heading (A), (B) and (C) with at least two from (A) and one each from (B) and (C):

(A) Qualitative impairment in social interaction as manifested by at least two of the following:
1. Marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture and gestures to regulate social interaction.
**One of the more common types is poor eye contact. For a while Bradley would not make eye contact during with others he was communicating with or those communicating with him.
2. Failure to develop peer relationships appropriate to developmental level.
**This is tough for first time parents to recognize, because it's difficult to understand what the peer relationships norm is like if the child with autism is their first child to interact with.
3. A lack of spontaneous seeking to share enjoyment, interests or achievements with other people, (e.g. a lack of showing, bringing or pointing out objects of interest to other people).
**The child may not attempt to draw attention to exciting things or things that need attention.
4. A lack of social or emotional reciprocity.
**The child may not demonstrate or express feelings of love, frustration, embarrassment, confusion, or sadness and may not readily recognize these emotions in others.

(B) Qualitative impairments in communication as manifested by at least one of the following:
1. Delay in or total lack of the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime).
**They are not effectively utilizing intelligible, expressive speech that is understandable to the lay person. This means that although Mom or Dad may understand some of their speech, the average person will not understand most of what the child is saying.  In more severe cases of autism, speech may be completely absent, with no effort for expressive speech.
2. In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others.
**This child may not initiate conversation with others or may not understand the dynamics of social conversation, like ending the communication abruptly.
3. Stereotyped and repetitive use of language or idiosyncratic language
**Ecolalia is one example- this is a repeating of language the child heard from a person, movie, or television show. This phrase may be repeated multiple times, could be repeated long after the timing of the initial hearing, and at times may appear to sound like meaningful language. For example, if a child repeats movie lines, sometimes adults may mistake that repetitive speech as an attempt to express needs. It may be fitting of the situation and seem appropriate, but at other times it may not make sense to the current situation.
Echolalia link: http://www.autism-help.org/communication-echolalia-autism.htm
4. Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level.

(C) Restricted repetitive and stereotyped patterns of behavior, interests and activities as manifested by at least two of the following:
-Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
**The child may be limited in the type of toys they like to play with and may often appear "absorbed" in that particular area of play.
-Apparently inflexible adherence to specific nonfunctional routines or rituals
**Transitioning from a desired to a non-desired activity can be very difficult for this child when compared to others their age.  Someone unaware of their autism diagnosis may unfairly and mistakingly label the child as a "spoiled brat, throwing a tantrum to get their way." The truth is, this child may not actually understand why the transition is occurring or the dynamics of waiting in line, taking turns, and group play.
-Stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
**These behaviors may not seem extreme or abnormal in younger children, but if they continue it will be more apparent how they can interfere with learning or may become socially awkward among peers.
-Persistent preoccupation with parts of objects
**An example of this is being very interested in wheels and spinning. Rather than pushing a truck or car along a table or floor like age-appropriate play, the child repeatedly spins a wheel around and around and around.  They are more interested in this aspect of the truck/car, rather than the intended function of the toy.

II. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
(A) Social interaction
(B) Language used in social communication
(C) Symbolic or imaginative play

My son, Bradley, received a PDD-NOS rather than an Autism diagnosis because his symptoms were subthreshold, meaning they were relatively mild compared to the Autism spectrum, but (left untreated) impair his social development and learning process. For more information about PDD-NOS check out this link:
http://www.autismspeaks.org/what-autism/pdd-nos

Blog Beginnings

"Are you the mother of the autistic child?" A school official asked me this question upon meeting me for the first time. A familiar storm of emotions began stirring in my body. Shock. Frustration. Hurt. ANGER! Thankfully a slow deep breath silenced those knee jerk reactions I was fighting so hard to overcome. "No," I answered, "I'm Bradley's Mom."

April is Autism Awareness Month. As a parent with a child on the autism spectrum, it is important for me to become an active advocate for autism awareness- for children on the ASD spectrum and for the families living with autism.  This mysterious and often misunderstood spectrum of developmental disorders desperately needs more parents educating others about their children.  Autism is not something that is easily understood because the symptoms of autism vary in degree from child to child.  I have wanted to begin a blog about this for a while now and have written 5-6 blog posts in my head already. After prayer and reflection I have realized that I need to blog about my experiences with the Autism Spectrum Disorders (ASDs) for many reasons:

1. For parents who are seeking information for their children. While our children may vary in diagnosis and degree of symptoms, we can relate to certain situations and support each other in ways that others may not understand.  The best way we'll learn more about autism is through sharing research and education we have gained in our experiences.

2. For my family. I have a HUGE family. I have an even larger group of friends and supporters who I include as family. Some have respectfully and honestly asked questions about Bradley. They have asked me how they can understand him better. In the past it has been difficult for me to talk about autism because I was working my way through "The Stages of Diagnosis" (I'll dedicate a blog to this concept I have formulated) or perhaps I just wasn't sure what to say.  I want my family and friends to understand Bradley better and understand how my role as his parent and advocate affects my relationship with them.

3. For myself. In the past I didn't think I had many I could talk to about my experiences with Bradley. God has really put it on my heart to share my experiences not just for others, but as a way to help me learn and grow stronger in my effort to be a better parent for my children.

4. For Bradley. If you ever have the privilege to meet my wonderful son, I want you to be able to understand him. As his mother, I will be his advocate and will introduce you to one of the coolest kids you'll ever meet. I also want Bradley to be able to look back one day at how far he has progressed and how much he was loved by those in his life.

So the blogging begins. There is so much I want to share and such little spare time I have to type it all out. I am excited and hope that you will share these posts with others in your life.  If you know someoene who has a child on the Autism Spectrum, please share my blog. If you have information you have found helpful in caring for children with Autism, email me please! The best email to send info to is:     jodie_hutchinson@hotmail.com

Check out www.autismspeaks.org as an excellent, valid resource for autism information and research.

Finally, for my fellow Momma Bears out there who are wondering how things worked out with the school official I mentioned above... Today we work well together and I truly believe that individual genuinely cares for and supports Bradley in his learning experiences.  I'm thankful for her question.  While I was offended by it at the time, it has made me focus my efforts on Bradley's individual strengths and challenges and investing myself in becoming the best "Bradley's Mom" I can be.