Saturday, May 31, 2014

Breaking Down the Autism Diagnosis

Good morning all. I hope everyone is doing well. I was sitting down enjoying my "super mom" coffee this am and realized that I've never written a post on why Autumn was diagnosed with Autism. Sure, I've disclosed bits and pieces of information, but haven't shared the "entire picture". 

So I've decided to share the "entire picture" using the DSM-5 diagnostic criteria as a guideline and then break down in BOLD what Autumn's symptoms that caused alarm and a diagnosis. Please remember that each child whose on the spectrum will experience different symptoms and they will vary in level of severity.  I've studied the DSM and had to use it when I worked with my clients. However, I'm no expert or doctor. Just a therapist turned mom whose acting primary role is of being a mother. So if those of you are reading this and saying, "my child does xyz...maybe they too are autistic.," go talk to your child's pediatrician and get a referral to see a developmental pediatrician and pediatric neurologist. They are the experts. What I share here is about my child and only about her. Use as a guideline if you wish or a tool to help you understand more about Autism, but don't take my words as being absolute. Talk to your doctors. Also, those of you who follow this blog know how much I love and adore my daughter. I'm not trying to highlight her negative behaviors because some of her autistic traits are positive (yes I said that). I just want to open the doorways into what Autism looks like for one child, my child. That is all and I hope that after some of you read this, you will walk away with more knowledge. 

Okay now that's out. Here we go, and again, everything is from the latest DSM-5 (Diagnostic and Statistical Method of Mental Disorders, Fifth Edition, 2013). 

Autism Spectrum Disorder (299.00)

A.      Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

1.       Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

Autumn's expressive language is around 18 months maybe a little higher. She doesn't "talk" in conversation. She only speaks when she needs something (for example: "I want juice please"). She can recite all of her letters, numbers, shapes and colors. She is labeling what seems to be everything, but again we do not have any real back and forth conversation, but we've been working on this daily. For instance, doesn't ask how I am or says things like "baby is happy" or "daddy is sad, I help daddy feel better." Which, at her age, she should say by now. She should be more "in tune" to other peoples feelings and the world surrounding her. The best way to put this is I feel as if she doesn't understand what others think or feel. She lacks the empathy where she can't relate or read others emotions. If I cry, she doesn't understand. She also doesn't smile back at me when I smile at her unless I tickle her. Basically, sometimes I feel like I'm seen as a tool to get her what she needs. 

2.       Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

Autumn still struggles with eye contact and it takes several times for her to respond when I call her name. Her receptive and expressive speech (again) is lower than it should be. She still has difficulty understanding directions but has improved somewhat. She will also scream and make strange sounds like crow sounds or will say the same words/sentence in order again and again. We believe the screaming/crowing is a vocal stim. This is something were currently trying to work on decreasing. Also, one can have excellent expressive language, meaning they can speak/talk well, but they have a difficult time engaging in conversations or become lost in their own words. So lack of speech doesn't always mean autism. There are some extremely talkative kids who have Autism because of the above (debunking myths here).

3.       Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

This is where Autumn is trying but there's some trouble mainly bc of the lack of words used to communicate. She will say hello to the little kids and grab their hand to play, but when they try to talk back to her to engage in a conversation, Autumn can't say anything else and "looses" them. It's one of the most heartbreaking things to watch. She does great otherwise, but mainly prefers to play alone after trying to engage with the kids. Her make believe play is great for her age. However, she doesn't like it whenever myself or a therapist tries to play and take turns. She will scream and fight her way out of it, but eventually she'll come along. Sharing and turn taking has been an ongoing work in progress and this has improved immensely over the last few months, but still a struggle at times. 

B.      Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1.       Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

As stated in the first section, she does become fixated on certain words and sounds. We don't believe she has echolalia, but tends to repeat the last thing said at times. Still not enough for her therapists and myself to be alarmed. She will line things up (lining up isn't always an indicator of autism-this is the organizational piece that I love about her) she flaps her hands whenever she gets excited and has verbal stims (she currently crows). 

2.       Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).

My Autumn Belle is big on routine and I mean, HUGE on routine and "sameness" as sameness is her comfort. However, she does adjust pretty well when she's not home and at her Memas house or when were on vacation. Maybe it's because I'm with her or she's with her Mema whom she also loves and trusts and she still gets the typical things that are part of her routine? I'm going to assume so. Another factor mentioned above is her difficulty to adjusting to new things. This is typical anytime one of her therapists introduces something new. Same with me here at home. She will scream and cry and throw herself on the floor whenever we try a new activity. This doesn't last too long because we don't allow this behavior for too long. After a few minutes, she comes along and will participate, but her "non-compliance" is one of our biggest concerns and the only reason why we implemented ABA therapy this past winter to kick this behavior in the bud. Anything new, "no thanks" in her world. This goes for foods (chicken and applesauce almost every day) and new people as well, which is why she scored extremely low in the Battelle. She didn't want to do the "work" bc she didn't "know" the therapist administering the test. However, on the upside, she has been saying hello to new people whenever were out. This is a huge and I mean HUGE milestone in our lives. Usually she says hi and is back to being fixated on something  else or will repeatably say "hi" over and over while the person tries to engage in conversation with her. A work in progress.

3.       Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).

To be honest, I am not sure if she has any real attachment to anything other than her momma lol. She currently is preoccupied with wanting to watch Frozen every night before bed. It's become her bedtime routine but not sure if that counts. 

4.       Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Yes, yes and yes. Autumn also has sensory processing disorder, but that's just another symptom of her autism and I can write an entire post on this topic alone. She needs constant pressure/deep massages. She seems to be hyposensitive when it pertains to pain or water temperatures (bath water too hot or too cold or food too hot and she doesn't say anything-of course I cool it down and take her out of the tub immediately knowing if the temp isn't right). She has light sensitivity. Hates loud sounds or people talking at the same time. For example, in mickeymouse club house, she screams when they say "oh toodles". I guess she's filtering out the sound. She is constantly moving and going. Nonstop. Rarely naps. Has poor coordination meaning she walks over everything and trips easily. Some of these symptoms mimic ADHD but she's too young to be diagnosed with it. For now, we have her on a sensory diet where we jump with her, rock her and do other activities to help "calm her". Again, a lot to say here, but the above are the main concerns.   

Specify current severity:

    Severity is based on social communication impairments and restricted, repetitive patterns of behavior(see Table 2).

C.      Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

        I started to see symptoms when she was about 18 months. She also lost words and this was probably the biggest indicator something wasn't "right". The "Prelude" post breaks down this in more details.

D.      Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

     Yes, I would say this has in more ways than one: social (her communication deficits), occupational (the sensory processing disorder), adaptive/self-help, etc. The communication and sensory issues are the biggest concerns. Everything else is relatively mild. 

E.       These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

No global developmental delay bc of multiple areas of delays. 

***So I hope that my personal breakdown of what Autism looks like for us helps you understand a little more about the spectrum regarding Autumn. I didn't list every little thing here because this has already turned into a novel. Autumn has made tremendous strides with EI therapies and us working with her in decreasing the "non-compliant" behaviors. Her symptoms may get better or worse with age, but the above is regarding today. Lots of love and hope. As in her favorite movie and song (changing the lyrics): "The stims never bothered me anyway". 



The "non-compliance" above. 

The pressure below (looks like a normal hug, but this is usually every few minutes and she pushes her lips against my cheek and squeezes my neck so hard that I feel like she is strangling me. She also likes to wrap her arms around me from my back and climb on me like a monkey and will make funny sounds when she does this. Looks so precious and believe me, it can be, but every few minutes it can become exhausting and painful for me bc she's pulling my hair and my skin.)

Her playing with the water table bc she's obsessed with water (not sure if this is truly a good thing, her love for water, it scares me a bit, I'll admit). She is "fearless" and a bolter so this is a fear I have, which is why I feel like I have to watch her 24/7. Another ongoing fear for many parents of children on the spectrum, as most of our kids love potentially dangerous things and are attracted to water and wandering. 

I love this girl! 

Tuesday, May 20, 2014

Small Talk

It's been a while since I've posted anything in my blog. The past month has been crazy with a capital C. Between Autumn therapies, family stuff, Matt's work schedule and our mini weekend getaway, I seriously have had minimal time to write anything of value. I've also been waiting for the right moment to post this one topic that I've been longing to share about with the world. It's the thing that I dread talking about with others in public, it's the small talk that I lothe the most and after this weekend I feel it's time to share.  

I get asked this question more times than I brush my hair (jk-well sort of) and it's one of those questions that I always have to say, "well see how things go". I know most people mean well and like I said, they're trying to make small talk, but sometimes I just don't know what to say... If you haven't figured out the question by now it's the "do you plan on having more children?" and all of the unsolicited advice that follows when I tell those that Autumn is quite the handful right now so the answer is unknown and that's the honest truth. 

I wish it were easy for me to say, "let's give it another go", but it isn't. Autumn does require more time and attention than maybe most NT children do so I feel like I'm bound to her and to throw another baby into the mix wouldn't be fair for her right now in our lives. Yet, a huge part of me wants to give her a sibling, someone who will grow up with her and be her Anna or Olaf to her Elsa, but again, that dreaded fear takes over. I've accepted the fact that Autumn may be my only child and at times, I have felt angry, resentment, and depressed because I feel that because of her developmental delays, our parenthood experience has been jaded. I say "our" because despite all that I've written thus far, I'm not the one who needs the convincing. 

Matt's more of the planner and everything has to be perfect in his world. At the current moment he's our sole financial provider, working two jobs and never turning down an opportunity to make extra money, so that I can stay home and focus on caring for Autumn. He's sacrificing his time being able to spend with Belle so that I can be there for her even though I have put off my own career (sacrifices on both ends, but all temporary). I know that I am blessed to have a husband who plans and wants to make sure we all are treading our heads above the water. I couldn't be more grateful and appreciative of such a mate so I understand why his reservations regarding expanding our family is more of a concern than it would be for me (he's thinking, can we afford this, I'm thinking, everything will work out la la la). 

Yet we both know that even with the best plans, shit happens. I planned my pregnancy with Autumn six months before even trying to get pregnant, I did everything "right" while being pregnant, had a very easy and minimally medicated birth and no complications and of course tried my best to practice attachment style parenting (minus the being able to nurse part, but she associated me with feedings and I fed her like I would've if I was nursing her). I did all that I could to try to "protect her" from autism and guess what, I had no control. I can't change the past or go over what I didn't do right during my pregnancy, birth and her first few years. It is what it is. I know God made her special for some reason that someday maybe I'll have the answer to but for now, I'm trying my best to "embrace the amazing". 

If we have another, could he or she have autism or developmental delays? Possibly, but that's the risk we all take when we have children. I also know many parents who didn't let their first child's limitations hinder them from having more children. I secretly want to know why, but to each their own. So at this point in our lives, the answer really isn't certain. I think to myself how awesome and incredibly blessed I am with my just my one beautiful girl right now and how with just one, we can travel the world, vacation, do so much together, and live financially comfortable, maybe even some day buy a vacation home elsewhere. How I will have a best friend for life without feeling like my time is divided or that I'm not being fair to one or not doing enough for both kids. Plus, I will be able to go back to counseling soon and while Autumn is in school, I can focus on my career and still be done in time to pick her up daily. I think of all of the great experiences yet to come with just the three of us (four if counting the dog). Yet, there may be this uncertainty that will remain...the, "why did we let fear win?" playing like a bad song stuck in my head. Right now, today, I'm content with what I have, but tomorrow, my mind will most likely change as the Pisces mind usually does. Darn fish.  

I guess only time will be able to tell and take us to the answers that I hope to receive. Whether it's staying on course or taking the plunge into deeper waters, we will figure it out. 



PS- Off topic, but too cute to not share: Autumn LOVED the beach this past weekend. She loves the sand and everything with sand and water...I know what someone is getting for her birthday (maybe sooner) this year! An ocean! haha, I wish!

Monday, May 5, 2014

My Open Letter To EI

While Belle fell asleep on the couch for a nap after having a busy morning with her Mema as well as waking up very early that same day (the stars were aligned), I decided to take some time and finally write an essay to enter into a contest describing my experience with Early Intervention Services. The winner will receive a gift card so the way I look at it, why not try and see what transpires. If I win, great. If not, it was a nice reflection piece.

I want to share with my fellow readers my essay and for you all to know that what I wrote about truly describes my experience with Early Intervention Services. I couldn't focus on just her one DI therapist, but she's the inspiration behind my reflection piece. Without getting too mushy here, Belle's DI has become a good friend to me. She will probably be the only one I stay in contact with on a regular basis after EI is over. It's not that we've become friends, she truly cares about my daughter and family's well being, always thinking of alternate ways to help us engage, even moreso with little Belle, in order to bring out her best. Thus, I am extremely grateful for her timing in our lives. 

Before sharing my essay, this is going to be a very busy week. I may not post much on my blog or Facebook page. I will try to check in from time to time. I hope everyone has a great week. 

So here's my piece, Enjoy!

An Open Letter to Early Intervention Services

By: Trish


Dear Staff at Early Intervention Services:


Words cannot express the true gratitude I have for the early intervention services that my daughter Autumn has received since April 2013. From the very first moments of making the initial phone call to the evaluations, meetings, therapist assignments, etc., every experience regarding early intervention has surpassed my expectations as well as been a positive one for my family. To begin, Autumn was around eighteen months when I started to notice that she wasn’t meeting some of her developmental milestones. Being that I work within the mental health field, I knew that I needed to get early intervention involved in order to best support Autumns future. At first, it was very difficult for me to hear that Autumn met the criteria for EI services. I had believed that perhaps it was my fault as to why she was delayed. Luckily, the team of therapists who did the initial evaluations alleviated my fears, comforted my tears, but most importantly, reminded me that I wasn’t alone and that my daughter’s delays were NOT a reflection of my parenting.

Once Autumn started to receive her therapies, I portrayed an active role during her sessions; learning and relishing in the knowledge gained from each one of her therapy sessions. Her therapists taught me skills such as providing PECS, sensory input, functional play (to name a few), that I never even imagined could help my daughter begin to speak, focus and attend. They listened to my concerns, gave their professional advice, accommodated our busy schedules, and have always been a phone call away. Her therapists have become more like family over the past year. Even with our move to a different county, they still continued to see my daughter because of their true dedication and determination to help her achieve her goals. In addition, our service coordinators (in both counties) have taken personal time to discuss my concerns about Autumn’s future, were emotionally there for me when she was first diagnosed, and have also worked to accommodate our needs, especially during the move. We have been truly blessed to have a team of professionals who seriously love and I mean LOVE what they do for a living: they adore our children and have a passion for helping them reach their full potential. Bottom line, they care.

When Autumn originally started EI she wasn’t saying words, didn’t make eye contact, etc., and was disconnected from the world. Because of the services received through EI, my dedication and determination to follow-through as her parent and primary caregiver, and our overall family support, Autumn has made leaps and bounds throughout the past year. She is now labeling everything (words)her sensory issues and negative behaviors have decreased, her attention span has improved, but most importantly, she now greets her dad when he comes home from work daily. Two months ago, she wasn’t doing that. The goals initially set forth when we first started EI have been met. Autumn is communicating with me! She is talking! She is growing into the little girl I’ve always dreamed of having as my daughter. As a parent, I couldn’t be more ecstatic, proud, and grateful for everything I’ve experienced throughout EI, as I know that because of her therapies, my daughter is who she is today: full of unstoppable potential.

My continued goal is to share our success story and to advocate for the importance of EI services. I understand that for many parents, this road may seem long, tiresome, and full of anxiety, but I often wonder where we’d be today if I didn’t put my own pride aside to make that initial phone call. Would Autumn be this happy, sweet little girl or someone entirely different? Thus, I will never regret the choices I’ve made as her parent. EI helped create a new path for my family, a new vision on life. I will always be imbedded to her therapists for the support they’ve given my family and for the chance of a bright future they’ve helped weaved for my daughter to experience. 

EI will soon be coming to an end, and despite how painful it will be to move forward, I am ready to see what else my daughter can do. She’s become this amazing butterfly under our wings and now she’s getting ready to fly on her own accord. So with much love and appreciation, thank you early intervention services for everything you’ve given our family. The one-time impossible has become the possible, full of endless opportunities, all because we had support; we had you (our EI team) by our side.



One Satisfied Parent for Life