Parenthood Magazine's shout out to ABA

Thank you, Parents Magazine, for talking about ABA and warning parents about alternative treatments.

Link:  http://www.parents.com/health/autism/autism-therapy-and-treatments/?page=1

Autism Therapy and Treatment Options

No two kids on the autism spectrum are the same, and often, neither are their treatments. Here's what you need to know about finding the right approach for your child.

By Virginia Sole-Smith 

 

Autism Spectrum Disorder (ASD) has two main hallmarks: difficulty with communication and social interactions and a tendency toward restricted, repetitive patterns of behavior and interests. But no two children on the spectrum are alike, which can make an ASD diagnosis particularly overwhelming. It can be hard to understand which aspects of your child's behavior and development are part of her ASD and which are typical for her age or just idiosyncratic parts of her personality. You may also worry that your child's issues are too severe or ingrained for treatment to make much difference, but it's important not to lose hope. "With good treatment, many and increasingly more children will get better," says Parents advisor Fred Volkmar, M.D., director of the Child Study Center at Yale University School of Medicine. "By that I mean they will grow up to be self-sufficient adults who can live independently. They may never be problem-free, but we see many children do very well."
If your child has been diagnosed with ASD, you'll need to find an autism specialist who can partner with you in your child's care. That specialist may be a neuropsychologist or neuropsychiatrist, a clinical psychologist or psychiatrist, or a developmental pediatrician. "The key is that he or she has special training in understanding the needs of kids on the spectrum," says Michael Rosenthal, Ph.D., a pediatric neuropsychologist who specializes in autism at the Child Mind Institute in New York City. Your pediatrician should be able to make referrals; you can also contact the Autism Response Team at Autism Speaks for help finding a qualified specialist in your area. Once you find the right therapist, he or she will work with you and your child to devise a treatment program that will look something like this:

Find the Right Behavioral Therapy

"When we see a newly diagnosed 2- or 3-year-old, our first goal is to get him into pretty aggressive early intervention known as applied behavioral analysis [ABA]," Dr. Rosenthal says. "There is a tremendous amount of research to show that this is the way to go." An ABA-trained therapist will work with your child for 25 or more hours per week, systematically encouraging desired social and communication behaviors and actively teaching the kind of social interactions that other children learn intuitively. The list of goals may include improving attention span, building social interaction skills, and developing verbal and nonverbal communication skills.
Depending on your child's specific needs and progress, other evidence-based approaches might be used. These include pivotal response therapy (PRT), which is derived from applied behavioral analysis; the Early Start Denver Model approach, known for its developmental curriculum of skills; or the TEACCH approach (Training and Education of Autistic and Related Communication Handicapped Children). Many children with ASD also benefit from occupational, physical and speech-language therapies, and others need a kind of hybrid approach, in which therapists choose from a variety of methods to meet their needs. "With children on the milder end of the spectrum, we often find that all they need is a little bit of speech-language therapy to help with social skills," Dr. Rosenthal notes. "Other kids really need the total treatment package."
It's important to understand that most public school systems offer only one kind of autism program. "It varies tremendously by school district whether your child can be in an ABA-based classroom or one with a developmental approach," Dr. Volkmar says. "We run into problems when a kid is diagnosed but the only program available isn't a good match with his needs." If you think your child's current therapeutic approach isn't working, talk to your specialist about the best strategy for switching to something different.

Consider Medication if Appropriate
"Medication can't fix autism itself but it can be useful if a child has some associated problems," Dr. Rosenthal says. For example, some children with ASD also experience high levels of anxiety, inattention, or hyperactivity; medications are often prescribed to help with those issues, which can otherwise interfere with their social and behavioral progress. "When medication can help get the symptoms of the associated problem under control, we often see a big jump in a child's progress," Dr. Rosenthal notes.

Be Wary of Alternative Treatments

Diets, vitamins, and chelation (a process that is said to remove mercury or other heavy metals from the body) have all been touted as treatments for ASD. But "none of these have any reliable science behind them," Dr. Rosenthal says. And some (particularly chelation, which can cause kidney or liver damage) can be very dangerous. If you want to pursue an alternative therapy for your child, be sure to consult a qualified physician first.

Will My Child Recover?

It's important for parents to understand that autism is often a lifelong condition, without any known cure. But good behavioral therapy is extremely effective, especially when it's started as early as possible. "It's not a question of whether a child with ASD can make progress--it's a question of how much progress," Dr. Rosenthal says. In 2013, researchers at the University of Connecticut co-authored a landmark study published in the Journal of Child Psychology and Psychiatry, which showed that some children with ASD can achieve "optimal outcomes." "The 34 children identified in this study were making friends, doing well in school, and generally functioning well," says Dr. Rosenthal, one of the study's co-authors. "They had effectively moved off the spectrum. It's too soon for us to say why these children did so well, but early behavioral intervention does appear to be key." Further research is needed to replicate the results in a bigger population and understand more about what worked so well for these children. Dr. Volkmar, who was not involved in the study, notes that the term "optimal outcome" is subjective: "I know one college-aged boy who by many definitions has 'moved off the spectrum,'" he explains. "But he also can't do his laundry, so we have a long way to go before he's fully functional in all areas of life." But Dr. Volkmar, too, wants parents to stay optimistic. "I have seen many young children make tremendous progress," he says. "There are so many reasons to be hopeful."

Losing the Autism Dx - A doctor's persepective

It sounds like Joey isn't protected from having to get a reassessment, but that's ok, because his school doesn't acknowledge his dx anyway.


Link:  http://www.huffingtonpost.com/arshya-vahabzadeh/autism-diagnosis_b_4885084.html

Why Are Children Losing Their Autism Diagnosis?

Posted: 03/03/2014 12:59 pm EST Updated: 03/03/2014 12:59 pm EST

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Parents of children with autism have many obstacles to getting their child the resources and support that they need. I was therefore concerned to hear about the increasing number of people who are reporting that their children are losing their autism diagnosis.

Why is this happening? Did their autism resolve? Did the parents ask for a second opinion?
In many of these cases the answer to all of these questions is a resounding "no" -- the children didn't change one little bit. What changed was the criteria for diagnosing autism, which is now based on the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This is the guidebook that is used to diagnose a range of different conditions including depression, bipolar disorder, and schizophrenia. There has been some debate as to whether the use of DSM-5 will reduce the number of people diagnosed with autism. Autism Speaks, a prominent autism advocacy group, has established an online survey that is beginning to discover that people with autism are being "undiagnosed" after having been reevaluated under the new criteria.
So why are people worried about losing their autism diagnosis?
A diagnosis of autism helps to ensure that special educational and social opportunities are provided to that individual; additionally, health care insurers are under increasing pressure not to deny coverage to people with an autism diagnosis. The reality for many people is that the loss of their autism diagnosis takes away many of these very helpful, sometimes crucial resources. I should emphasize that the gold standard for diagnosing autism remains a specialist clinical assessment. Doctors and other clinicians may very well have different opinions. Blood tests, brain scans, or psychological testing cannot make or rule out autism.
A little caveat
In order to prevent every child from having to undergo a reassessment, and with the knowledge that losing an autism diagnosis can impact health care and educational resources, a clear caveat was placed into the DSM-5. A stipulation that I feel many people with autism and their caregivers don't know about. This caveat can help protect families from being forced to undergo a "reassessment" on demand from any organization. The DSM-5 clearly states that anyone with an established autism, Asperger's, or pervasive developmental disorder that was diagnosed prior to release of DSM-5 should continue to be given the new diagnosis of autism spectrum disorder. This becomes especially important if there has been no clinical change in the child. It doesn't mean that the parents cannot seek out a second opinion, or that if their child develops new symptoms then other conditions cannot also be diagnosed.
As a physician, I realize that a fundamental part of my work involves moving past a diagnosis, and trying to make my patients lives better. While some children with autism may also have psychiatric or medical conditions that I can help treat, the vast majority benefit hugely from suitable educational and social skills resources. The reality is that these resources are so tightly tied to an autism diagnosis, that "undiagnosing" these children would be detrimental to their longer term outcomes. Our health care and educational systems struggle to help children that require assistance but lack a diagnosis.
Picking and Choosing
I think it would be duplicitous for any organization to pick and choose the components of DSM-5 that one would adhere to when looking at a child with a possible autism diagnosis. We cannot on one hand use the criteria to attempt to "undiagnose" a child with autism (and in the process put their educational, social, and healthcare services into turmoil), while on the other hand deciding to skip over the explicitly stated caveat that a previously made autism diagnose should persist.
I understand, and many researchers have pointed out to me, that grandfathering these autism diagnoses is scientifically messy at best. It may take decades to "clean up" the science; in the meantime, it's my duty to advocate for my patients.

Follow Arshya Vahabzadeh, M.D. on Twitter: www.twitter.com/@vahabzadehMD

The first week (and a half) of 3rd grade

We have survived our first full week (and 2 days)!

The first day went well. We got there 24 minutes early and just in time to snag the last parking spot. New classroom, no familiar faces, and he says he doesn't remember his teacher, who is the mother of a classmate from 2nd grade / former t-ball teammate. I annoyed him with my usual pictures. He was anxious just to get into his classroom. I told him to unpack his backpack and he said "You do it." I knew he was feeling anxious so I helped him unpack and showed him how to organize his desk.

This was the first year I didn't pick him up from the first day - my dad  did - so I was anxious to find out how his first day went. When I got to my parents house to pick him up, I asked "How was your first day?" His response?  "Horrible." Why? Because he says it made summer vacation end.

The second day went better and he came home telling me that his day was "good" which was an upgrade from "horrible." But it didn't start out good. We arrived on the playground like we did everyday last year. I waited with him for the bell to ring and for him to line up with his class. But today was different. I totally forgot that it was a new year and a new grade, which meant a new line to find.

When the bell rang, I asked him if he knew where to go. He said "Yes" and ran off. As I turned to leave, he ran over to me with panic in his voice and said "I don't know where to go." We walked over and when we weren't sure, I asked Mrs. Yanez. She said her line was right in front. When I got Joey in the right line, he said, "This doesn't look like my class. I don't know anybody." I assured him it was the right class and pointed out Kayla from 1st grade. He was still visibly upset. I was so worried about him that I drove up to school between appointments in S. Phoenix to have lunch with him and make sure he was having a good day. When I got there, he introduced me to Samuel and Leland. Samuel is the boy that earlier that day, Mrs. Yanez told me Joey was playing rock, paper, scissors with on the 1st day and resulted in him having his desk moved. When she told me, I couldn't believe my ears. My son got in trouble for socializing! Music to my ears! Words I never thought I'd hear!!

The third day started without a hitch and ended with Joey and Connor walking out together and asking if they could have a play date. I had a feeling this might happen and I'm glad it did. Connor had asked the day before if they could have a play date soon and on the way to pick Joey up from school, Connor's dad had texted me about the possibility that afternoon.

Monday started the first full week of school. It also was the day he was ok with me leaving him on the playground before the bell rang! We got into the groove of daily homework and a new way of taking a spelling test. He forgot his folder on Monday and we had to run back to school. He knew I was upset and said "I'm very sorry. Is there any way I can make it up to you?" He promised he wouldn't do it again. My boy is growing up.

By Wednesday, it was time for Grandpa to pick him up again and I guess there was an issue on the first day. Well, there is always confusion on the first day, but I found out through Mrs. Yanez that he told her he was an am/pm kid and so he was there instead of at Jamba Juice. When we were trying to coordinate where Grandpa would pick him up, he was visibly frustrated. I know it was because he gets confused and is starting to feel frustrated about it. Another thing to show he is growing up. I tell myself that we can work on it. As a mom, I just never want him to feel anything other than happy.

The first full week ended with Connor coming to our house for a play date. Unfortunately, at 2:45p.m., I was called by the nurse because the teacher sent Joey to the nurse because "he smelled. He smelled yesterday but it was worse today" (that's what the nurse said the teacher said). It was a bump in the road that we've been working on and it has improved, but that incident was a reminder that we still have some work to do.

On to full week #2 and a wonderful year of growth, new friends, new experiences, and overcoming learning obstacles. I love my sweet boy!

Independent Joe on his way to 3rd Grade

August 6, 2013

My sweet boy. I have no words. I broke down earlier as I packed up his new Skylanders Giants backpack with all of his supplies for his 1st day of 3rd grade tomorrow.

I told myself I wouldn't cry. I told Joey I wouldn't cry. I lied to both of us.

There were so many times over the course of the summer that I was just in awe of the little man that my sweet boy is becoming. The things he said, the way he acted, the concern he showed for his friends and family, the confident reader he is becoming, the choices he is started to make for himself (his clothes, activities, etc.)...all of these things show how his personality is changing and how he is growing up.

I don't know why I get misty every year on the first and last days of school. I'm not sure if it is because he is my one and only baby boy, if it's because of the journey we have been on and how far we've come, or if it's because every year, he needs me just a little bit less.

I mean, let's face it...every mom goes through a constant identity crisis for 18 years. We become somebody's sole supporter the day we give birth, and as the years go by, we struggle back and forth with wanting to be needed and fighting to get our independence back, hoping we aren't need sped so much, even just for one day.

I love how far Independent Joe has come. But now matter how old he gets or fast he grows out of my arms, I will always long for the days when he would say, "Do you need some snuggle time? Because I'm available."

Board Certified Behavior Analyst. Wait...that's me!

Today started out like any other day. Although I had been waiting for weeks to get the results from the BACB, I tried to put it in the back of my mind. I even started planning alternate career choices if I didn't feel like redoing my course work. Call me a negative realist.

I sat in the movie theatre, waiting for Despicable Me 2 to start. I checked FB before shutting my phone down, and someone posted on one of the BA message boards that the results were posted.

I panicked.

Do I check now and chance ruining the movie that Joey has been waiting over a year to see?

Or do I wait and get increasingly anxious as the movie goes on.

I checked. The site page looked different. I scrolled down. My jaw dropped.

Then I saw the word PASSED.

Holy crap!

My mom looked at me and asked me what was wrong. I stammered when saying "I passed my exam."

I texted and then called my husband.

I texted my boss and told her I had bad news. She said she couldn't handle any more. I told her she was stuck with me and I passed. She called me crying.

I texted Nick and told him I had bad news. He called me and I told him to buy me that bottle of vodka he owed me.

I texted my closest family members and co-worker friends.

I posted to FB: "What did I do today? Played games, tried not to die in the heat, saw a movie and....found out I'm now a Board Certified Behavior Analyst! In the words of my son: "Boom!"

I am still in shock. This is surreal.

And so a new journey begins. I am beyond excited. And relieved. And proud of myself for not giving up. And forever thankful to my Joey, who started me on this journey. He is forever my inspiration to be a better person. I hope I make him proud.

Farewell 2nd grade

What a month May has been.

We wrapped a 2nd season of soccer. Joey had a great time this season. Not only did he ask to sign up so I know the motivation was there and last season was reinforcing to him, but he got to play with Hannah, Aydan, and Connor from his class. AND Lexie, our next door neighbor was also on the team. Also, Hannah's dad was the coach, who just happens to be an OT with tons of experience with kids with special needs. Could I have asked for any better scenario.

May was also the month that Joey started having after school hang outs with Connor. 2 Fridays at his house and then 1 Friday at ours. We have plans to see Connor this Thursday, and Joey even gave up one of his end of school gifts (3 Skylander Giants figurines) so he could give Connor "another Skylander Giant because he doesn't have a lot of giants." So sweet!

Joey also started Kumon on 5/21. This is another step towards becoming a better reader.

And then there was the farewell to 2nd grade and to Mr. Svorinic at Parkridge (he is heading to Liberty in August). I was pleasantly surprised that on the last day of school, Mrs. Stone (his reading teacher) told me he has already mastered his IEP reading goals that were written 1 month ago!

I am so proud of him and how hard he works! I wonder what 3rd grade will have in store for us?

Joey, nitrous oxide and butter

Joey had nitrous oxide at the dentist today when they filled a small cavity and sealed 3 of his teeth. This was his first time. I was nervous. The neurologist said it would be safe.

Joey went back like a trooper and a half hour later, he was done. He looked a little "off" and the assistant said he threw up a little. As we walked outside, he said he wasn't feeling well. In the car, he asked "What do you call this sickness?" I said "A side effect from the gas." He asked, "Well how do you get rid of it?" I told him that he needed to eat soft foods, drink liquids, and maybe poop and pee it out.

When we got home, he said "Mama, I'm gonna do what you said:  pee and poop." He informed me he pooped twice and then told me he was sleepy. He cuddled up to me and slept for almost 2 hours. He told me after that he felt better after his nap. He was back to his normal crazy goofy self

He ate Lipton noodle soup and had Italian bread with butter for dinner. He ate good! I saw him playing with Cocoa while he was eating. Later on, I noticed that he had butter inside the leg of his pants. I asked, "How did you get butter in your pants?" How often do you hear yourself asking that? I guess it went flying during his bread tug of war with Cocoa.

Well now we know the effects of nitrous and that he is ok with it, for the most part.

Joe becomes an ABA therapist

While Joey was waiting for speech to start, our former neighbor was attempting to elope from OT and get Joey's iPad. Each time, I told Joey to pause his game and wait for the boy to go back to his OT. When the boy was done, he asked Joey for the iPad and Joey says, "Umm are you done with your therapist?" I told him he should come work with me and he said "You couldn't handle me for a whole day."

Redirecting goodbyes

Written 4/2/2013:

Goodbyes are said, all of Joey's things are back at the "heavy house" and his Dad is on his way. I was afraid there would be tears from Joey, but in typical Joe fashion, when Daddy said, "I'll see you in September," Joey said, "I can see my face in the doorbell."

It's sad and cute at the same time. I am glad that he is not upset and in tears; however, it shows how detached he can be. Maybe it's his coping mechanism. Only time will tell how well he does with his Dad leaving again.

Update 4/16/2013:

It's been exactly 2 weeks, and Joey has only mentioned his Dad a few times. His Dad, who is also very detached, went 12 days without so much as a text to see how Joey was doing? He texted me Sunday and then called a few times. Is it wrong that I want to put Daddy on extinction and ignore his attempts at contact for 12 days? Ben had a whole week before his fiance arrived, and still he couldn't find time to reach out to his son. Seriously, how long could a call take? Joey only ever talks for a few minutes. And how long does it take to text? Even the slowest texter can get it done pretty quick.

I wonder if and when my heart will stop breaking for my son.

Autism Awareness Day

Today, I don't celebrate Autism; I celebrate my son, his accomplishments, and my belief that we can improve the lives of kids with Autism. We will celebrate all the children affected by Autism today in the way we always celebrate: doing the robot dance.

Autism has led me down a path and on a journey that I never could have imagined. It has shown me great sorrow and great joy, and strengthened my faith in love, determination, and honestly, science. I feel like I was able to pull my son back through to me somehow before I completely lost him. I never thought that I would ever hear the words "I love you, Mama" from him but now I do everyday. We stil...l have challenges ahead, but I wouldn't change one step of this journey because it led me to where we are today. Joey made me a Mom the day he was born and challenged me to be the best parent that I can be over the last 8 years. Everything he does amazes me because I never thought that he would have friends and play dates, be a part of a sports team, be mainstreamed with typical kids in school, laugh at my jokes and imitate my sarcasm, show concern for others, and even have a conversation with me. Some parents take those things for granted, and even think I'm weird because I marvel at everything he does. But if they could only understand that just a few years ago, I never thought any of these things were possible. And then I found an amazing place called SARRC and our journey began...