Interviews with American mothers living abroad

Here is a fascinating  collection of stories about parenting in other parts of the world.

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How Blue Cross Blue Shield and a handful of Senators are blocking autism insurance reform in North Carolina.

Autism Spectrum Disorder is more common than childhood cancer, cystic fibrosis, and multiple sclerosis combined. In the US, autism affects 1 out of every 68 children, while in North Carolina, that number is 1 in 58. Although it has no cure, there are treatments and the best current treatment available, Applied Behavior Analysis (ABA) therapy, is unavailable to the majority of citizens of North Carolina due to the acts of Blue Cross and Blue Shield of North Carolina along with two Senators, Tom Apodaca and Phil Berger.

The cost of Early Intervention is much less than cost of leaving autism untreated.

A Harvard study found that the cost of lifetime care for an autistic person is about $3.2 million, although the author, Michael Ganz, believes that the true cost is even higher because some variables are hard to measure. The American Academy of Pediatrics found that children with special health care needs with autism spectrum disorder were more likely to

  • live in families that report financial problems
  • need additional income for the child’s medical care
  • reduce or stop work because of the child’s condition
  • spend ≥10 hours per week providing or coordinating care
  • paid more than $1000 in the previous year for the child’s care.

Although most people consider autism untreatable, many new studies show that “early behavioral intervention is associated with normalized brain activity in children with autism”. These studies have shown that children receiving intensive, specialized therapy before 3 are more likely to have higher IQs, better speech, and to function more similarly to their elementary school peers.

In a 1998 cost-benefit estimate [PDF] for early intensive behavioral intervention, the authors conclude that the savings of 3 years of EI between 2 and school entry can save an estimated $187,000 to $203,000 per child ages 3-22 years, and from $656,000 to $1,082,000 per child for ages 3-55 years with an initial cost of $33,000 to $50,000 per year. Diagnosis age has slipped even lower since 1998, with the MCHAT and other measures allowing for children as young as 14 months to be diagnosed. As knowledge improves, it is reasonable to assume that the savings rate is even higher now.

Early Intervention typically consists of Speech Therapy, Occupational Therapy, Physical Therapy, and ABA Therapy, for those parents who can afford it.

ABA standards for Applied Behavior Analysis and is currently considered the “best research supported and most effective treatment for the main characteristics of autism”. The American Academy of Pediatrics released a report that said, “the effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings. Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.”

The only alternative to ABA offered by the state of North Carolina is Play Therapy and, since $18 million was cut from the NC Infant-Toddler program, many parents are unable to get even a half hour of Play Therapy a week.

In a public statement in response to criticism over their autism coverage, Blue Cross and Blue Shield of North Carolina said that they cover the diagnosis and treatment of autism because they cover:

-doctor visits for primary care and specialty providers for the diagnosis and on-going treatment of autism without any limitations on the number of visits

-pharmaceuticals that are used to treat symptoms associated with autism

-physical therapy

-occupational therapy

-speech therapy

While Speech Therapy, Occupational Therapy, and Physical Therapy can help, their scope and practice is quite limited compared to ABA. My son was enrolled in Occupational Therapy at 11 months and Speech Therapy at 15 months. Despite our early efforts and the amount of visits we were able to get covered (more than many), when he was diagnosed with autism in April of this year, he showed no understanding of words or of many basic human interactions including pointing. On Nov 4th, he’ll be 2, and in that time, the change in his behavior and abilities could be said to be miraculous, it is so dramatic. He went from having severe speech delays in both categories to having a healthy receptive vocabulary (how much he understands) and an expressive vocabulary (how much he can speak) in the normal range. He points, seeks out my attention when he plays games, engages in imagination play, and kisses me and his stuffed animals. He’s still very much autistic (and probably will always be), but because of ABA, it is highly likely that he will be able to share a classroom with his neurotypical twin brother. Without early treatment, it is far more likely that children on the spectrum will end up permanently disabled and relying on Medicaid and Social Security in order to survive.

What’s more, without insurance covering ABA therapy, parents who can afford to spend tens of thousands out of pocket are more likely to use companies that charge less. ABA therapy, when done incorrectly, can be abusive, and North Carolina currently allows individuals without any education background to call themselves ABA therapists after receiving only 12 hours of training. Without proper therapy for their children, some parents turn to dangerous forms of ‘treatment’, such as bleach therapy (you can read the horrific details here).

Blue Cross and Blue Shield argues that ABA therapy is an educational intervention, not a medical one, and they would have children with autism rely on our underfunded school system [PDF] in order to receive treatment. Even if we ignore all the studies that say that school age is way too late to begin treatment for autism, requiring the therapy to come through the schools costs tax payers considerably.  During the 1999-2000 school year, the United States spent $77.3 billion on support services and regular education for disabled students.

Lorri Unumb, an advocate for ABA therapy, has compiled data from the 37 states that include ABA in autism coverage and found that “the treatment ends up costing insurance premium payers about 30 cents per member, per month to pay for coverage for everyone“. Autism Speaks President Liz Feld wrote an open letter to Blue Cross Blue Shield of North Carolina asking them to please reconsider their policies. They remain steadfast. A Blue Cross and Blue Shield lobbyist told Rep. Jim Fulghum, “Just say no” in regards to the bill. “Just say no” to giving autistic children therapy. State Employees and Teachers are now covered, so why deny it to other parents?

Bills that require insurance companies cover ABA treatment have passed the House two years in a row. Despite the support of 82% of North Carolina voters and the Representatives, the bills die in committees chaired by Tom Apodaca. You can look at the progress of the bill during the 2014 season here. Phil Berger, who has the power to bring the bill to the Senate, has not done so. Since we know that Early Intervention can benefit children with autism and save the tax payers so much money, why would they refuse to bring this bill to a vote?

Tom Apodaca has received at least $13,000 from Blue Cross Blue Shield, while Phil Berger and his son have taken at least a combined total of $28,000 from 2008 to 2014. From 2000 to 2008, Apodaca took $9,400, while Berger got $10,700. When I asked about the latest bill in a Facebook groups for autism in North Carolina, I was told that Apodaca is actively working against families with autism. They described how he ignored all calls, emails, and letters. Anyone who tries to make a personal plea was kicked out of his office. When asked why he refuses to pass autism insurance reform, Apodaca claims that “Until we get guidance under the Affordable Care Act, we’re kind of tied,” yet, this is false since several other states have passed autism insurance reform without a hitch. In 2015, Washington, Oregon, Nebraska, and Maryland began coverage, while Kansas and Maine expanded coverage.

The problem is not limited to the two of them. An analysis by Democracy North California found that:

no other company the size of Blue Cross has donated more to state politics through its political action committee –- a total of $643,000 from the 2000 election cycle through 2008.

Apparently, Blue Cross Blue Shield has bought the politicians of North Carolina leaving thousands of autistic children without the therapies they need at the expense of the taxpayers.

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Military children with autism are at risk with the newest changes to their health care policy.

Edit: thank you so much for all your help. You made this change a positive one.

My son was diagnosed with autism in April and, in that month, I didn’t know if I would ever have a normal Easter Egg hunt with him. He wandered around aimlessly and, since he didn’t understand pointing and only intermittently responded to his name, our attempts to teach him how to hunt eggs were futile. 17 months old, he showed no understanding of words despite being in Speech Therapy for 2 months. His skills lagged behind that of his twin, even though he’d been in Occupational Therapy for over half a year. I used my knowledge of behavioral studies in monkeys to conduct various assessments of how many words he understood and, when he started to finally pick up words at the end of that month, I could tell he was still far behind his peers. We started Applied behavior Analysis (ABA) therapy as soon as he turned 18 months in May. On Nov 4th, he’ll be 2, and in that time, the change he has undergone could be said to be miraculous, it is so dramatic. He went from having severe speech delays in both categories to having a healthy receptive vocabulary (how much he understands) and an expressive vocabulary (how much he can speak) in the normal range. He points, seeks out my attention when he plays games, engages in imagination play, and kisses me and his stuffed animals. He’s still very much autistic, but because of ABA, it is highly likely that he will be able to share a classroom with his neurotypical twin brother.

As a military family, we have Tricare, which is the health insurance program used by military personnel, military retirees, and their dependents. Tricare recently announced some new changes to their policy on ABA therapy, which is what is used to treat dependent autistic children. Although some of these changes are positive, others will negatively impact autistic children and their military families. You can read the policy and a summary of the changes here, in another blog post. Presumably, these negative changes were made to save money, but not only will they negatively impact the children of our troops, they will end up costing us much more in the long run.

The cost of Early Intervention is much less than cost of leaving autism untreated.

A Harvard study found that the cost of lifetime care for an autistic person is about $3.2 million, although the author, Michael Ganz, believes that the true cost is even higher because some variables are hard to measure. The American Academy of Pediatrics found that “children with special health care needs with autism spectrum disorder were more likely to live in families that report financial problems, need additional income for the child’s medical care, reduce or stop work because of the child’s condition, spend ≥10 hours per week providing or coordinating care, and paid more than $1000 in the previous year for the child’s care. The financial impacts of autism spectrum disorder were significantly more burdensome when children with special health care needs did not have a medical home.”

Many studies show that “early behavioral intervention is associated with normalized brain activity in children with autism”. These studies have “demonstrated considerable IQ and speech gains and much better functioning in elementary school for children receiving intensive and specialized intervention by age 3”.

In a cost-benefit estimate [PDF] for early intensive behavioral intervention conducted in 1998, the authors conclude that the savings of 3 years of EI between 2 and school entry can save an estimated $187,000 to $203,000 per child ages 3-22 years, and from $656,000 to $1,082,000 per child for ages 3-55 years with an initial cost of $33,000 to $50,000 per year [Tricare currently caps ABA at $36,000 per year, although with the new changes, there will be no lifetime cap or yearly cap].  As diagnosis age slips lower and knowledge improves, it is reasonable to assume that the savings rate is even higher now.

Early Intervention is clearly important, but why ABA in particular?

ABA standards for Applied Behavior Analysis and is currently considered the “best research supported and most effective treatment for the main characteristics of autism”. The American Academy of Pediatrics released a report that said, “the effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings. Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.”

Why not obtain coverage outside of the military?

Putting aside that this question ignores the existence of dual-military families, despite the clear benefits to Early Intervention and ABA, North Carolina is one of the few states where insurance companies are not required to cover ABA, although a bill is moving forward. As a military spouse, even if I were to quit my current part time job and manage to land one in this poor economy, it is highly unlikely that my insurance company will cover ABA therapy. North Carolina has cut $18 million from the NC Infant-Toddler program, which means that my son was unable to receive Play Therapy, an alternative to ABA that had previously been offered through the state.

Even for military families in states that provide good coverage, it is very difficult for spouses to get jobs with benefits, if they can get one. The Military Officers Association of America released a study that found that 90% of military spouses are underemployed and are 30% more likely than their civilian counterparts to be unemployed. If the constant moves, deployments, training sessions, and other difficulties didn’t make matters hard enough, most mothers of autistic children said that they worked fewer hours to take care of their children. Individuals who are medically retired due to disability may be limited in the work available to them. It is not just that autistic children tend to require higher supervision and for longer periods of time than neurotypical children, my autistic son receives about 20 hours a week worth of therapies, most of which strongly encourage my presence if not my participation in order that we can work on various skills outside his official hours of therapy. For military families stationed overseas, the local networks may not provide enough support to handle ABA therapy appropriately.

If a family qualifies for Medicaid, then the family will be covered, as there are new guidelines require that autism treatments, such as ABA, must be covered up to age 21, but a military family shouldn’t be forced to apply for Medicaid in order to receive the treatments their children need. Our military men and women put their lives on the line for the country and we repay them by denying their families, especially their children, the full services they need? For non-active duty family members, the new policy requires a 10% copay. For our family, that would amount to $250/month, and the Operations Manual acknowledges that the cost share can be $125 to $200 per week, which is cost prohibitive for many families. NADFM includes those retired after 20 or more years of service to our country sand those medically retired. The least we can do is help their children receive the medical services they need.

While Early Intervention and ABA are important, these new changes have some benefits such as no lifetime cap, no annual limit, and no maximum age for beneficiaries.

Not all of these new changes are bad. The no annual limit, no maximum age, no lifetime cap, and a few other policy changes are very good. Some policies have effects that remain to be seen. For example, in some areas, not allowing BCaBAs to be independent ABA providers has limited access to care. While I applaud a higher national standard for ABAs in terms of education and training, raising standards while cutting reimbursement rates to providers is likely to result in a greater shortage of care. Rates to BCBAs (Board Certified Behavior Analyst) were slashed in half and the rates to the BCaBAs (Board Certified Assistant Behavior Analyst) fell even further, so both rates are now outside market value in many areas.

Also of huge concern is the reduction of skills for focused intervention. Before, 10 skills were targeted: social, communication, behavior, mental health, vocational, adaptive, motor, academic, cognitive, and developmental. Now, only 3: social, communication, and behavior are targeted. Although there is a strong argument that a potty trained child (adaptive skill) who is able to feed themselves will be much better equipped to handle mainstream school, and therefore, potty training could be considering a social skill, ABA specialists need to be able to properly code these deficits in order to receive reimbursement for the therapy. As the new standards require an ASD diagnosis by a specialized ASD provider or the ADOS-2, these services will only be used by autistic family members.

While ABA is designed to be useful within the school setting, parents often have to fight to get permission for their children’s therapists to accompany them to school. With recommendations of ABA reaching as high as 20-40 hours a week, it can be very difficult to get enough therapy if the therapists are not permitted in the classroom. Not to mention, the best place to teach social skills is in a social setting, such a classroom. I try to take my son to playdates and parks, but he’ll receive the most benefit to his social skills in a classroom with an ABA therapist at his side.  However, without academics as an area of concern, it will be even harder for parents to convince school authorities to allow their children access to their therapists, and many BCBAs have said that they believe the changes will make it impossible for them to enter schools. It is only after becoming involved in the autism community that I have become aware of how hostile some teachers can be towards their autistic students, with a frightening number of stories of teachers who were abusing their autistic children. Currently there is no federal law that prohibits the use of restraints that restrict breathing, and locked seclusion, in public and private schools, although more than 20 students, many with disabilities, have died to seclusion and restraints being used in schools. Even well-intentioned teachers who fail to understand the peculiarities of autism might see a student as combative or disruptive when the student is only trying to be helpful. As many teachers here have reported classrooms of 30+ students (since there is no limit on class size in North Carolina), having an extra adult in the classroom, especially one trained in child behavior, will also help the other students.

Not only will it benefit students to have their therapists in the classroom, it could even save lives. Autistic children frequently attempt to leave a safe environment at a rate nearly 4 times their unaffected siblings. These wanderings are responsible for making drowning the leading cause of death amongst autistic children 14 and younger at a rate of 91%. Autistic children have drowned on field trips and after eloping from their schools. I have seen first hand the danger of water to some autistic children when my son started walking into a lake at a family picnic and basically didn’t stop. I had to hold onto him to stop him from walking far out into the lake. ABA therapists can not only teach autistic children to remain safely in their schools, they can provide an extra eye in over-filled classrooms. It is not an exaggeration to say that ABA therapy can save lives.

Another area of concern with the new ABA policy is the 2 year limit placed on therapy with Tricare conducting a review before authorizing more care, as well as the harsher discharge criteria, and requirements for a discharge plan and projected duration. Some children respond well to ABA therapy, while other children, particularly those with intelligent disorders in addition to autism, require much more intensive work and are likely to need ABA therapy for many years. At this point, there is no way to know which children will move to mainstream schools and which ones will need lifelong care, other than we know that those who receive ABA are more likely to move so far up the spectrum, they are sometimes considered ‘recovered’ from autism. It is possible that Tricare will hire those trained in ABA therapy to conduct the reviews at the end of the 2 year, but it is also likely that the regional contractor will not have the necessary training. Already, Tricare requires a referral renewal each year. If a developmental pediatrician and an BCBA both agree that a child is autistic and requires ABA therapy, it is highly unlikely that the child does not.

Since autistic individuals are known to regress during times of stress, and military children are 2.5 times more likely to develop psychological problems than American children in general, it is reasonable to expect that autistic military children will experience more regressions and difficulties in progression compared to a child in a civilian family. Autistic children like routine and stability, both of which are hard to maintain when families move an average of once every three years and most military children attend 6 to 9 different schools between kindergarten and 12th grade. Having a deployed parent increases a child’s risk for emotional and behavioral problems, and for autistic children with speech difficulties, it can hard to convey to them why the parent has left and when the parent can be expected to return (or even that the parent will return). Autistic children are sometimes thought to not be attached at all to their caregivers, but all of my military friends with autistic children have observed issues that arise when deployments or field training exercises happen. Of my twins, my autistic one was the one who more openly showed how much he missed his father and how happy he was upon daddy’s return. The ABA therapists, who work closely with families, have a much better judge of the current stressors and complications impeding the child’s development. That’s why it is critically important that the therapists’ professional opinion (along with a developmental pediatrician or similar professional) is used to determine the success or lack thereof of ABA therapy, rather than third party who will only review the current progress compared to the past.

The last thing we need to place upon the shoulders of our military members is stress about the health of their children. ABA therapy can be the difference between an autistic child requiring Social Security and a group home, and one who is fully independent. Because of the cost effectiveness of Early Intervention and ABA therapy in particular, there is no reason to restrict it beyond its current levels, especially in the school setting, one area where it is desperately needed.

Please, contact your representatives and your senators. Explain the changes to the Tricare ABA policy that will harm military families. Contact Richard Hart of Tricare Policy and Operations and let him know that cutting down services down from 10 to 3 and slashing reimbursement to providers will end up costing the public more in the end. richard.hart@dha.mil

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We need your help. Some of the new changes to the Tricare ABA policy will hurt autistic children.

EDIT: Thank you so much for your help! The changes made have worked out to be beneficial to our family thanks to your support. We still need to fight to cover those who have retired, but we were able to keep the services we have.

On September 24, the policy on ABA therapy was updated to this [PDF warning], which means new changes to how autism will be treated under Tricare. The American Military Families Autism Support group released a summary of the changes and why some of them are of major concern to military families with autistic children. In brief:

  • Non-active duty family members will have a 10% cost-share. The Operations Manual acknowledges that this cost share can be $125 to $200 per week.
  • A 2 year limit is placed on therapy with Tricare conducting a comprehensive review before authorization of more ABA. It is unclear what will be required in order for ABA to be extended, but most children with require more than 2 years of ABA therapy.
  • Services paid to a BCBA were cut in half, while BCaBA dropped by nearly 2/3rds. Since ABA is mostly done in home and therapists can only charge for time spend with client, current rates help with costs related to travel, purchasing supplies, designing programs, etc. The quality and availability of ABA therapists, already limited in some areas, will drop considerably.
  • Covered skills has been reduced tremendously with all educational and vocational goals dropped. This includes daily living skills, potty training, learning how to use a phone, basic self-care, and many other issues that can mean the difference between a child needing specialized instruction and education and attending regular classes.
Photo from Nagivation Behavioral Consulting

Photo from Navigation Behavioral Consulting

  • Excluding educational skills limits access to specialized autism schools and addressing skills in a school setting. It is already very difficult to get ABA therapists in the classroom.
  • Requiring a projected duration of ABA and a discharge plan shows ignorance of the nature of autism, which is usually a lifelong disorder with no cure.
  • The discharge criteria means that Tricare can cut services if they feel that not enough progress has been made. Regressions are common in autistic children, especially children places in stressful situations such as moves or deployments.

While the no annual cap on therapy is a very welcome change, the therapists need to be paid a fair wage in order for us to obtain the services we need. Navigation Behavioral Consulting has released these charts explaining why they object to some of the changes.

From Navigation Behavioral Consulting

From Navigation Behavioral Consulting

Navigation Behavioral Consulting

Navigation Behavioral Consulting

What you can do: Contact your representative and your senator. Explain the changes that will harm military families. Contact Richard Hart of Tricare Policy and Operations richard.hart@dha.mil Contact local media outlets, especially if you live near a military post and have an autistic child. Explain how some of these changes will harm services. *edited to add images from Navigation Behavioral Consulting showing details of the changes.

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It’s natural to fear a connection between vaccines and autism

When my twins were about 6 months old, we went for their 6th month checkups, and then to the immunization clinic in the same building for their shots. Shortly after that, my son, Corwin*, broke out in a high fever that reached 104.8 at its peak and a prickly red rash that spread over his body. Not long after that he regressed. He stopped babbling, stopped responding to us as much, and spent a lot of his time sitting by himself pressing a button on a toy to make a song or sound over and over again. He was enrolled in the early intervention program by 11 months, started speech therapy at 15 months, and was diagnosed with autism by 17 months. For some in my family, the diagnosis seemed to come out of nowhere. No one else had been diagnosed in my extremely large, extended family. He was the first of the twins to smile and play peekaboo and other social games.

I’ve always been very scientifically minded and never understood the anti-vaccine movement until this point. I saw it as similar to denial of evolution, close-mindedness in the face of overwhelming evidence. As a parent, I understand the fear surrounding the choices we make for our children and the social judgment not far from the days of the refrigerator mother theory where we parents (especially mothers) are scrutinized and criticized for our every actions. We special needs parents are asked if we vaccinated, took medicine while pregnant, used infertility treatments, did drugs during pregnancy, etc. Sometimes strangers openly blame us for the children they see as a curse. A friend of mine with autistic twin boys was told that the reason she’s had her special needs boys was that she hadn’t been Christian enough. The just-world fallacy is rife in parenting communities as well as the idea that children are blank slates who reflect the values and qualities of their parents. However, any parent of multiples could tell you that children are born with their own personalities, needs, and desires.

The hardest part of being a special needs parent is not my son, whom I regard as a blessing, but ignorant people who judge and pity us. I had to leave a local parenting group because so many there saw my son as vaccine injured and broken. To them, he was a mistake. To them, his autism is a black stain to be scrubbed away as quickly and as thoroughly as possible.

They are wrong.

Vaccines did not cause my son to have autism. He was born with it. How can I be certain? For one, I knew he was autistic before his first regression. Since male twins have a higher rate of autism than the general public, I was watching for signs at a very early age. I started to suspect that he had autism at 4 months based on how he’d look away when I’d play games like pattycake with him. I also observed that he seemed to be easily overstimulated by my presence when he was tired. Although no one in either of our families had been diagnosed with autism when my son was diagnosed, now that I understand more about autism, I can see signs of various relatives being on the spectrum, and two have come to regard themselves as autistic.

That reaction after the 6 month check up and shots? We never got the shots that day. The immunization clinic was closed for training. My son most likely had roseola, which was passing through some of his playmates at the time. Another time, only Alden got the vaccines and was fine, while Corwin developed a fever and fussiness over the weekend. Corwin seems to get high fevers easily, and may have picked up a bug in the waiting room.

Having been through that experience with the fever so shortly after visiting the clinic, I feel a great deal of understanding for parents who see the shots as the cause or potential for problems. It’s a decisive moment and society tells us that we are responsible for who and what our children become. However, it is very important that we do not confuse correlation with causation.

As part of my undergraduate degree, I conducted a study on foraging behavior in rhesus macaques. We’d observed a unique method of handling food in some of the macaques and suspected it had to do with ground cover, but also thought it might be due to other factors such as population density and age of the macaques in the group. In order to tease out the variables, we conducted a large-scale study and each member of the group analyzed a different aspect. As I collected and started to process my data for analysis, I thought for sure I’d found a possible cause for the odd foraging behavior. Once I ran the data, I found that not only was there no causation, but there wasn’t even correlation. I had imagined it. My first instinct was that I had processed my data wrong and had to run a different method. My professor reminded me that proving something wrong is just as valuable as proving something right, and that, if you manipulate data enough, you can make it say nearly anything you want. There was no correlation.

There is no positive correlation between autism and vaccines. There are positive correlations with autism and parental agematernal infections during pregnancy, pesticide-treated fields and even organic food sales. In fact, studies of the flu and MMR vaccine in pregnant mothers suggest that vaccines might help prevent autism. A Danish study found that “children whose mothers had influenza or a fever lasting more than a week during pregnancy had a higher risk of autism”. Congenital rubella syndrome, caused by mothers catching rubella during pregnancy, is positively linked to autism.

I’ve heard some parents argue that even a slight risk of autism means that it’s better to forgo vaccines. However, many of these parents imagine that they are playing Russian roulette with only one gun. They see the bullet labeled autism and figure that if they never get vaccines, they never have to risk autism. However, by choosing to avoid vaccinations, they are playing Russian Roulette with a gun stocked with bullets labeled with vaccine preventable diseases. Not only are they playing with it for their own children, but other individuals as well, individuals immunocompromised, too young to be vaccinated, or with conditions that make vaccination an unwise choice. Disease has come roaring back and for what? The chance to avoid having a child like my son?

These beliefs are why I leave the groups mostly comprised of anti-vaccine advocates because they see my son as something so terrible, they would risk serious complications, even death, to avoid him. To avoid an infant who was and is far more of a momma’s boy than his neurotypical twin. To avoid a little boy who loves music, cars, being tossed in the air, dancing, and owls. To avoid a sibling who loves his brother so much, even though we put them in separate beds to go to sleep, he can’t resist joining his brother after we leave. To avoid a child who sees the world in a beautiful, unique way and has taught me so much.

I had a parent ask me, “when you knowingly have the diagnosis in your family, why reproduce anyway if you are of the belief it’s genetic? That’s just unfair to the child.” I could not disagree with this more strongly. Although I didn’t learn that I had autism in my family until after my son was diagnosed, if I could go back in time, I would do everything all over again. I would be very happy to have another son like my own. I strongly believe that part of the reason he’s come so far with therapy is that I was accepting of his autism from a very early age.

It’s natural to fear a connection between vaccines and autism when autism is presented as a big, scary horrible disease and vaccine preventable diseases are brushed off as nothing. It’s natural to fear a connection when individual parents say that it happened to their children and could happen to yours. It’s natural to draw conclusions between two unrelated events. It’s important to be aware of the latest research and not reach for medicine to solve every childhood ill. Children are over-prescribed antibiotics, and fevers can be helpful and don’t necessarily need to be treated with painkillers. There are many other reasons parents say that they avoid vaccines, but most of those are all too similar to the fears about autism.

My son is not something to fear. He’s amazing. Any parent would be blessed to have him.

littlehand

*Names changed to protect privacy. Last updated Feb 1, 2015

 

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Making ABA safe and helpful.

When my son was diagnosed with autism at 17 months by a developmental pediatrician, she suggested I enroll him in ABA therapy immediately. She gave me a sheet with a long list of providers and very little information about each one. My son’s Early Intervention coordinator had warned me that I needed to carefully screen ABA providers because she’d had bad experiences with a few. When I went online to ask for recommendations and find more information, I came across even more horror stories. Autistic adults who had gone through ABA therapy in the past described abusive therapists. One man had a therapist force him to touch something he found repulsive. He eventually learned to hide his repulsion, but he never got over his distaste for that substance. There are certain fabrics that I can’t stand, and the idea of being forced to touch them over and over while I learned to school my reactions makes my skin crawl. Imagine being forced to listen to nails on a chalkboard (or some other noise you find abhorrent) and then punished for your reaction.

Multiple individuals described how their therapists forbid then from flapping their hands as well as an ABA therapist who insisted that children had to sit completely still in order to learn. I discussed this with a neurotypical Greek friend of mine who said, “If I can’t move my hands, I can’t talk.” As an anthropologist by background, I find great value in neurodiversity. I have no desire to turn my autistic son into his neurotypical twin brother. Autism can be a blessing and I want my son to be treated with the dignity and respect he deserves. I don’t want to cure his autism. At the same time, I needed more help. He had been in speech therapy for a few months and occupational therapy for over half a year. Even with these efforts he showed no understanding of words, pointing, and spent a great deal of time stimming by himself, which he does when he is overwhelmed by the environment. Of the 20 questions on the M-CHAT, 16 answers I marked showed a risk for autism. Autistic adults suggested RDI [Amazon link to the book I found most helpful] and Floortime. I bought the books and joined groups, but most parents had children much older than mine and I found it difficult to carve out concrete plans. In an RDI group, I had people telling me to teach my 17 month old son mindfulness without going into details. The nearest RDI therapist was 3 hours away, and my insurance only covered ABA. While it was very clear that ABA done incorrectly can be abusive, I also found positive experiences. One thing that my son’s EI coordinator made clear was to remember that the therapists worked for me. I could control the experience. I figured I might as well try it out and see if I couldn’t shape it into a positive experience for my son.

The first thing I did was find companies that applied ABA in an evidence-based, but child led way. I used the guidelines in the amazing book An Early Start For Your Child with Autism, which I highly recommend for all parents of autistic young children. On page 21, they have a checklist of criteria for measuring the quality of a home-based early intervention program. Amongst other items are:

  • Does the program manager have an education background appropriate for working with young children with ASD?
  • Have the program manager and all home therapists passed a criminal and educational background check?
  • Have the program manager and therapists been trained and certified in an intervention method with scientific evidence to support it?

In order to assess how well the services met this checklist, I sent an introductory email to the various companies explaining what I was looking for in ABA therapy and also what I didn’t want. I introduced my son and his fascinations (cars, music, swings), and said that I had read about issues with ABA and didn’t want any form of punishment. While some companies glossed over this, the one I hired acknowledged that there had been issues with how ABA had been applied and assured me that they did not punish their charges. Another thing I found out through my eventual ABA therapist is that companies in North Carolina are allowed to hire people who have no background in a relevant field and have them put to work after 12 hours of training. They are supervised by a BCBA, who has more training, but I insisted on having therapists who either had an educational background or experience working with children under the age of 3.

Once I picked a company and set a meeting with my son’s therapists, I explained in detail what I hoped to accomplish. I emphasized that I wasn’t trying to turn my son neurotypical and wanted to keep the sessions as playlike as possible. I gave them my copies of my RDI, Floortime, and An Early Start books with activities, goals, and views of treatment highlighted for easy reference. They agreed to incorporate the techniques into the work. I insisted on staying beside my son and participating in all the sessions. If you encounter a therapist who wants you to leave, run, especially if your child is unable to communicate fully.

Based on what I had read online, I expected that I’d need to correct or change some of their therapy methods, but I’ve actually been very happy with the type of therapy that they’ve provided. On the other hand, I’ve had a speech and an occupational therapist that I replaced. One occupational therapist went through a checklist of items that my son was supposed to do at his developmental stage and would push that task on him. For example, he was supposed to be able to stack blocks, so she would force him to sit and stack blocks. This isn’t how we teach neurotypical children at that age. With his twin, I would stack them in front of him and do a little hand over hand, but I never pushed him to do something over and over again and didn’t let him leave until he finished. With her, he never stacked more than 3 and only after pressure. After she left, I never once pushed him to stack blocks. He stacks them perfectly now.

The speech therapist I fired would force him to sit in a chair on the floor and she’d sit less than a foot away, ignoring his pleas to leave the chair. It was clear by the end of her visit that he was overstimulated by her presence. The other speech therapists followed him around and enthusiastically joined him in play, similar to the ABA therapists. In the Floortime book Engaging Autism [Amazon link], the authors stress how important it is to follow the child’s lead and enter into their world, rather than trying to force them into ours. If my son wants to play with cars, we play with cars. The therapists do bring their own toys, books, puzzles, etc to help him with certain tasks, but never force him to do a task, and certainly never physical force him to finish the task before allowing him to engage in play. We do have house rules, which they help enforce, but the rules we enforce are things like No Pulling Tardis’s [our cat] Tail.

It’s not enough to avoid punishment. Even positive reinforcement can cause harm if done incorrectly. For example, a child might be forced to meet their parents eyes before being given food. While it may not be painful for a NT person to meet someone’s eyes at close range, many individuals with autism experience extreme discomfort. Because of this, I never enforce eye contact through any means. I do friendly activities that encourage him to look at my face, but he’s never forced, not even to receive his favorite treats.

I’ve had some people (always on the internet and never in person) tell me that if I’m not strict and quick to push therapy to ‘correct’ or ‘cure’ him that he’ll never develop and I’ll have to place him in a home when he’s older. Total bullshit. In half a year, my son has gone from no understanding of language to testing out of speech therapy with both expressive and receptive scores above average. Therapy doesn’t have to be forceful to be effective. You don’t need to remove all traits of autism for a child to have a successful life. My son still doesn’t like direct eye contact from people close by. That’s absolutely fine. I know many creative, successful, kind adults who found direct eye contact a source of discomfort when young, and others that still find it difficult. When he does give me glances when I play patty cake or other games that involve close contact, which are growing more frequent, I know that they are driven by his desire, not out of duty.

There was an ABA therapist I encountered online who claimed that getting children to sit still in a chair with their hands ‘quiet’ was necessary for them to learn. Total bullshit. Do hunter gatherers force their children to sit in chairs? Do we force preschool children to sit in chairs? Exercise helps neurotypical people learn, and recent studies have shown the benefit to children with ADHD as well. Not all schools or jobs require an individual to sit completely still. In fact, for many jobs, being able to think while moving is critically important. A mother I know who homeschools her autistic children has a circuit she has them complete in between sitting down to read and doing homework.

When considering what to do in therapy, I always ask myself, “Is this necessary?” For some things, like putting on sunscreen or getting him to sit in his car seat, it is necessary. For many things, it is not. In ABA therapy, when a behavior is problematic, the therapists are supposed to look to the root and address it instead of the behavior. My NT son had a huge problem with throwing things. I asked the ABA therapist what to do about this behavior (I ask a lot of questions about my NT son, since I think it is very helpful for all children). She asked me to consider why he was doing it. For attention? Because he doesn’t know how to set them down gently? To see how things work? Once I realized that he was doing it out of not being taught how to set things down gently, I focused on teaching that behavior. Another problem we had with him was hitting. I figured out that his hitting was him wanting to rough house, but lacking the ability to ask for it. Once I taught him how to ask for rough housing but, more importantly, giving him regular opportunities to rough house, the hitting vanished.

In an Aspergers Experts video, a resource produced by individuals with Aspergers, they discuss the sensory funnel and how parents and therapists often try to tackle the social and self-help skills first. A good ABA therapist understands the sensory funnel and focuses on trying to meet the children’s sensory needs first.  A good ABA therapist focuses not on trying to make the child act NT, but to help them with certain deficits that cause problems in their daily lives.

When therapy is done with the goal of erasing autism, then that therapy, whether it be Floortime, RDI, ESDM, ABA, or something else, it will always have the potential to be abusive. If a therapists believes homosexuality needs to be cured, then their therapy will have an extremely negative impact on their gay client. If the focus is on acceptance and understanding, then it is far more difficult for abuse to occur, even in systems of therapy that have the potential to be incredibly abusive. As I’ve stated before, this doesn’t mean that a parent must accept and embrace every single thing their child does. We certainly put limits on our NT children and shape their behavior. It is simply critically important that a parent focuses on what is actually deleterious rather than what is atypical, since some atypical behaviors can be strengths.

So how does the ABA therapy work? What do they actually do in a session if it’s mostly play? Most of the time it’s as simple as getting out a bag of bubble toys along with another toy, asking which one he wants, and praising him when he indicates which one he wants. The therapist will blow a bunch of bubbles, then pause and ask him if he wants more, saying “more buh-buh-buh-bubbles?” When he was learning sign language, we’d do hand over hand to get him to sign more. Then we started working on getting him to say more by enunciating the “m” sound of more. “Mmmmm more? Mmmmm more?”

The therapists also help me solve various problems I run into in my daily life. For example, my son started refusing to sit in the shopping cart. He’d reached the point where it was difficult to carry him through the store, and I couldn’t always go to the store alone. With the help of the ABA therapists, I figured out how to get him into a shopping cart without a meltdown that lasted throughout most of the shopping trip. When he gets out of the car, I let him walk around the car and talk about the wheels for a set amount of time. He’s obsessed with wheels and will fixate on them if we don’t let him have his ‘fix’. Once he’s expressed his joy of my car’s wheels, I walk with him to the store. Brother is pushed in the cart, but my son prefers to walk past the other cars and the ABA therapists taught me how to get him to let me hold onto him in the parking lot. He doesn’t like to hold my hand, so I let him hold play cars while I steer him by his shoulder or upper arm. When we are inside, I put both boys in a cart and offer them each the choice between two special treats. Usually my son selects a tablet preloaded with educational apps. On our last trip to the store, we got compliments on how well behaved both boys were. Before we instituted these measures, going to the store was extremely stressful for both of us.

I’m constantly looking for things to avoid and techniques to integrate. I want to know the bad experiences people have had so I can be sure to avoid those with my son. I also want to hear about what worked for other people. We are still learning about autism and I’m sure our children have much to teach us.

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Autism rates have not increased

Amanda Baxter (Queensland Centre for Mental Health Research in Australia) and her colleagues have put together a study entitled “The epidemiology and global burden of autism spectrum disorders”. You can read it here (warning PDF).

In 2010 there were an estimated 52 million cases of ASDs, equating to a prevalence of 7.6 per 1000 or one in 132 persons. After accounting for methodological variations, there was no clear evidence of a change in prevalence for autistic disorder or other ASDs between 1990 and 2010. Worldwide, there was little regional variation in the prevalence of ASDs. Globally, autistic disorders accounted for more than 58 DALYs per 100000 population and other ASDs accounted for 53 DALYs per 100000.
In other words, autism only appears to be increasing because of better awareness.
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The Kennewick Man Finally Freed to Share His Secrets

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A Western Lowland gorilla holding her infant from the Great Apes Survival Partnership (GRASP-UNEP).

greatape

For a long time, the claim in the human literature was that humans are the only primates in which mothers have eye contact with their infants. It is true, that humans have more of it, especially since ape babies most of the time cling to the belly, but eye contact is certainly not absent in other primates, not even in the monkeys.

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The History of Vaccines

A fascinating, interactive page that explores the history of vaccinations.

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