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My son's PT told us to scatter objects on the floor to help with navigation. My home isn't messy now. I'm just teaching spatial awareness.

— Chimerical Capuchin (@chmercalcapuchn) January 31, 2015

The connections in autistic brains are idiosyncratic and individualized — Each autistics’ brain is distinct; non-autistics’ brains are remarkably uniform

You’ll often hear, those of us involved with autism say, “If you’ve met one child with autism, you’ve met one child with autism,” but never before have I seen a study that so accurately captures what we have observed.

Autistic brains, in contrast, were all different. Each had regions of high and low connectivity, and there were regions whose connectivity was increased relative to controls and those that were decreased. But no standard template emerged; when these scans were superimposed one atop the another, no distinct areas of high and low connectivity were discernible.

This comparison of grouped brain scans, rather than just the individual ones, revealed that the unusual pattern in the connectivity of ASD brains is due to the topology of their connectivity patterns and not necessarily the strength or weakness of any given connections. It also revealed that people with ASD have more individualized, idiosyncratic connectivity patterns than controls do. Each autistic brain differed from the norm, but each did so in its own way.

The sample size is small and limited, but it reflects fairly accurately what I have observed of the many different individuals I’ve encountered with autism.

The problem with articles on autism risks and how to evaluate studies. Or why circumcision is unlikely to increase rates of autism.

It seems like every month, articles pop up all over the internet blaming something else for causing autism. To the average person, it looks as though scientists have no idea what they are doing and are just throwing out darts to see what sticks. It’s hard for the average person to have faith in science when it seems to change more easily than the weather here in North Carolina where you can wear shorts and snow pants in the same week. It’s not just a problem with studies on the cause of autism. In scientific circles, it is well-known that popular science articles frequently misinterpret and misunderstand scientific studies, to the point that it’s become a joke. However, because of the ‘popularity’ of autism and the fear-mongering done in the media, it seems as though studies on autism catch fire rather quickly.

Because of my background, I’m often asked by friends to interpret articles posted in popular press, or to cut through the overwhelming information on certain subjects and deliver what most researchers in that field actually believe. There are many excellent guides on how to find and evaluate online studies that go into the subject in more detail, such as Understanding Scientific Studies, A Guide to Looking Smart on the Internet: How to Find and Evaluate Online Information, How To Read and Understand A Scientific Paper: A Guide For Non-scientists (start with this one if you are looking for a quick overview), and for those interest in articles on birth, Understanding Research, The Birth Professional’s Guide. This article is not meant to replace those excellent guides, merely give an overview of how a study on autism can be misinterpreted, and what I do to evaluate popular press science articles.

Here is how a recent study is presented in popular press:

The Mirror reports:

Circumcision in young boys can DOUBLE the risk of developing autism

and the article goes on to state, “Scientists believe the finding may be linked to stress caused by the pain of the procedure.

The study of more than 340,000 boys in Denmark found that circumcision raised the overall chances of an autism spectrum disorder (ASD) before the age of 10 by 46%.”

The Mirror is a British tabloid newspaper which is quite controversial, so the first thing I do when I encounter something like this is try to find more details in a more respectable publication, such as Science Daily. The headline on in Science Daily,

Ritual circumcision linked to increased risk of autism in young boys

is already a much more accurate portrayal of the research. The Mirror implies casual relationship, while Science Daily reports just a correlation. The Mirror implies that multiple or even the majority of scientists believe in the veracity of this study, while Science Daily notes that it is simply the two authors of this piece who hold this belief. More importantly, Science Daily links to the actual study.

When looking at studies, the first thing I do is examine where the study is published and who conducted the study. Not all journals are created equal and there are some journals that are pay to post, where anyone can get a study in provided that they pay a fee. These studies have been duped into publishing outrageous studies, including one written by Maggie Simpson. This study was posted in The Journal of the Royal Society of Medicine. From the wikipedia page on the journal, we can learn that “[i]t claims to act as ‘a forum for debate, education, and entertainment for clinicians interested in UK medicine and relevant international developments and research. The aim of the journal is to influence clinical practice and policy making across the whole range of medicine’ and that it has “open peer review, a system in which authors and reviewers know each other’s identities on the assumption that this improves openness in scientific discourse. This made it one of the few medical journals in the world with open peer review”. Of course, even if a study makes it into a prestigious journal, that doesn’t mean that study is 100% accurate as was scene in Wakefield’s retracted Lancet study, but a study published in a prominent journal is more likely to be reviewed by professionals before and after publication.

A good journal will also note conflicts of interest, which can be seen in this study. Under competing interests, they note:

MF has been an author of articles on health-related and sexual consequences of male circumcision and has taken part in national and international debates on the ethics of male and female circumcision.

Even if the journal had been one that did not declare conflict of interest, a google search of Morten Frisch, the primary author, reveals that he is an anti-circumcision activist with claims such as male circumcision leads to a bad sex life. While researchers who have personal interests in subjects can still be 100% correct in their assessment, even good scientists are at risk of personal biases, and a critical eye needs to be turned to all studies that support the beliefs of the scientists conducting them. I try to be more critical of studies that match what I wish to be true because I know I am naturally more inclined to believe ones that match my opinions, which is known as confirmation bias. In this particular circumstance, I am against RIC and didn’t cut my boys, so I have no emotional biases against this study. I only mention these facts so as not to be accused of being in denial about the results of the study.

In the study, the authors state, “[p]ainful experiences in neonates have been shown in animal²⁶ and human studies^4,27,28 to be associated with long-term alterations in pain perception, a characteristic often encountered among children with ASD..²⁹” The citation for this statement is this study. When I looked at the cited study, I found this abstract:

There is a lack of knowledge about pain reactions in children with autism spectrum disorders (ASD), who have often been considered as insensitive to pain. The objective of this study was to describe the facial, behavioral and physiological reactions of children with ASD during venipuncture and to compare them to the reactions of children with an intellectual disability and nonimpaired control children. We also examined the relation between developmental age and pain reactions. The sample included 35 children with ASD, 32 children with an intellectual disability, and 36 nonimpaired children. The children were video-taped during venipuncture and their heart rate was recorded. Facial reactions were assessed using the Child Facial Coding System (CFCS) and behavioral reactions were scored using the Noncommunicating Children’s Pain Checklist (NCCPC). A linear mixed-effects model showed that children’s reactions increased between baseline and venipuncture and decreased between the end of venipuncture and the recovery period. There was no significant difference between groups regarding the amount of facial, behavioral and physiological reactions. However, behavioral reactions seemed to remain high in children with ASD after the end of the venipuncture, in contrast with children in the 2 other groups. Moreover, we observed a significant decrease in pain expression with age in nonimpaired children, but no such effect was found regarding children with ASD. The data reveal that children with ASD displayed a significant pain reaction in this situation and tend to recover more slowly after the painful experience.

Bolding mine. Displaying a significant pain reaction is not the same thing as experiencing a significant pain reaction. We can’t assume that the display is an accurate representation of perception. Even if autistic children do have a higher perception of pain compared to neurotypical children in the same circumstance, it is quite a stretch to say that “lifelong deficits in stress response” show that early pain causes autism. Is it that children with autism have deficits in their stress response or is it that children with autism find the world more inherently stressful due to other mechanisms? 

The study also states

Specifically, using data from nine countries, Bauer and Kriebel³¹ observed that with each 10% increase in a population’s neonatal circumcision rate, the estimated prevalence of ASD increased significantly by 2.01 per 1000 boys. The present study was carried out to address the hypothesis that ASD might be a rare adverse outcome in boys undergoing ritual circumcision during a vulnerable period of life.

But when you examine the study in question, the authors were examining a possible link between acetaminophen/paracetamol (Tylenol) usage and autism, not circumcision itself. Under the category ‘Weaknesses’ within the Danish study, the authors note, “Unfortunately, we had no data available on analgesics or possible local anaesthetics used during ritual circumcisions in our cohort, so we were unable to address the paracetamol hypothesis directly,” but it seems too big a factor to not seriously consider or at least attempt to measure. (And if you are concerned about the autism/ADHD link with acetaminophen/paracetamol, please see this excellent write up.)

Returning to the study, we see the authors note:

In Denmark, ritual circumcision is an uncommon procedure, except among Muslim and Jewish families…Overall, 3347 boys (0.98%) in the cohort were ritually circumcised in a hospital department or a doctor’s clinic before their 10th birthday, including 2903 circumcisions among 26,664 boys (10.9%) with a likely Muslim cultural background and 444 circumcisions among 316,213 other Danish boys (0.14%)

Since cultural difference can throw off studies, the authors attempt to correct for this.

To address any such influences, we created for all cohort members a cultural background variable based on information about the country of birth for their parents and grandparents. Using the criterion of having at least one parent or grandparent born in one of the following 17 predominantly Muslim countries (Turkey, Iraq, Pakistan, Iran, Somalia, Lebanon, Afghanistan, Morocco, Egypt, Syria, Indonesia, Algeria, Jordan, Bangladesh, Kuwait, Tunisia and Kosovo; no other predominantly Muslim country in the world accounted for more than 0.1% of all non-Danish born citizens), this variable categorised 7.8% of both boys and girls in the cohort as belonging to a family with a likely Muslim cultural background.

Yet, there are many potential problems with this as well as the fact that many religious circumcisions are likely performed outside of medical centers. The authors do note that themselves later on

Recently, Muslim authorities in Denmark explained to the National Board of Health that Muslim circumcisions are often made by private practitioners in their clinics or in the boys’ homes. One possible explanation for the apparent low overall circumcision rate in boys with a Muslim family background is that when payment occurs directly between parents and doctor, no public record will be available. The extent to which such arrangements take place, or similar ones involving non-Danish doctors or non-medical circumcisers, will determine the degree to which our 10.9% figure is an underestimate.

Based on the huge differences in cultural background between these two groups, I am suspicious of the results of this study, as I don’t believe the authors did enough to control the cultural differences.

The authors also speak of “infantile autism” versus “all other types of ASD”, where classic autism is considered separate from a diagnoses of Asperger Syndrome or Pervasive Developmental Disorder- Not Otherwise specified. It is worth noting that individuals with “infantile” or classic autism are typically diagnosed at a much younger age and the authors noted no risk factor with all other types. All of these diagnosis are including under the autism spectrum umbrella, so it seems odd that only classic autism shows a greater risk factor if circumcision is the mechanism by which it is caused.

Another part that raises suspicion is:

In a study from the United Kingdom where infant circumcision is uncommon the estimated mean age at ASD diagnosis was 66 months.⁴³ This is considerably older than the corresponding average age of 39 months in Israel where most boys are circumcised on the eighth day according to Jewish tradition.⁴⁴

It is worth noting that the comparison is age of diagnosis rather than overall rates of diagnosis. The UK study also includes non-classic autism, while is it not clear if the Israel study did as well. Children in Israel also undergo more thorough assessments for autism, which is possibly catching classic autism earlier. Cultural studies of autism reveal that diagnosis rates change based on how countries view autism, so I find it highly unlikely that the difference is do to circumcision rate.

The most important takeaway from this piece is, “Possible mechanisms linking early life pain and stress to an increased risk of neurodevelopmental, behavioral or psychological problems later in life remain incompletely conceptualised,” which of course, seems to be all but ignored in popular press stories on this study.

Is this study accurate? It is impossible to say given the limited data presented. Other studies will examine this piece and lend credit to it or disprove it. One study is not enough to state that circumcision can double the risk of autism, especially a flawed study like this. Science is a process, not a set of beliefs. When an article says “scientists say…” the average reader tends to interpret it as a consensus, when in reality, it sometimes means that more than one scientist holds a position. Unfortunately, most popular press reporting on autism tends to be along these lines. The next time you see a headline proclaiming what can cause or ‘cure’ autism, take it with a huge grain of salt.

Again, if you are interested in learning more about this subject, please check out these links: Understanding Scientific Studies, A Guide to Looking Smart on the Internet: How to Find and Evaluate Online Information, and especially How To Read and Understand A Scientific Paper: A Guide For Non-scientists. If you are a busy person and don’t have time to research every topic in detail (I sure don’t), then pay attention to what studies the prominent researchers are sharing on social media or backing. If you have questions about studies, then ask in places frequented by researchers, such as r/askscience.

Stop the hyperbole when it comes to breastfeeding

This excellent article, Stop The Hyperbole When It Comes To Breastfeeding encompasses many of my beliefs in regards to breastfeeding. My son, Alden, was born unable to suckle, even from a bottle, and I chose to supplement with formula and donated milk until I could make enough on my own. It required a lot of hard work and sacrifice on my part to the point that I became chronically sleep deprived. While I’m happy that I was able to breastfeed for two years and (mostly) enjoyed my relationship with breastfeeding, I wish I had taken better care of myself in that first year, especially in regards to sleep.

Recently, a friend with newborn twins messaged me in a panic because of the difference between IQ points that has been observed in breastfed, full-term singletons versus formula fed, premature twins. Breastfeeding was not going well, but she was worried about giving it up because of the disadvantages her twins already had. I told her what I wish someone had told me in those early days: formula feeding, either through supplementation or full, will not damage your child’s intellect, and may be a much better option for your family than breastfeeding or bottle feeding expressed milk.

For one, those studies that link breastfeeding with IQ points may not be entirely accurate. When siblings are compared, no significant differences in IQ were found. Even if a link is later found with other studies, and IQ is slightly lower in formula fed children, there are many other examples of parental choices that can reduce IQ in children, such as the link between number of children in the family and IQ score, which results in younger children and children from large families scoring worse than those older and with fewer siblings. I have 8 siblings and my dad has 7. If the younger ones in our families have lower IQs than us older siblings, that is not shown in success or happiness. Indeed, numerous studies have shown that IQ doesn’t matter as much as conscientiousness, openness to experience, grit, and curiosity amongst other traits. Do we tell mothers that they will damage their families by having more children because of the differences in IQ? Of course not.

Another important factor in my support for women choosing to formula feed is the link between maternal depression and infant attachment. While breastfeeding is tentatively linked with IQ, chronic sleep deprivation is solidly linked with depression, negative emotions, and hostility. Although my boys were such terrible sleepers their first year that I doubt a few baby bottles topped off with formula would’ve helped much past the first 4 months, it would’ve helped me considerably had I done it more during that time period when I was most sleep deprived. Many women find that breastfeeding increases the overall amount of sleep they get, but that sadly was not the case for us. Several friends of mine had to chose between breastfeeding and medication for postpartum depression or other mental health conditions. Many expressed conflict and guilt, which was not helpful at all for their mental state.

When my boys were a few months old, I took them to a local parenting shop to pick up a few items with my mother-in-law. Our trip overlapped with their every-two-hours meal, so I decided to feed them in the store. My mother-in-law rocked one baby while I breastfed the other. One of the store employees saw me and asked if I was breastfeeding my twins. I said I was, but also used some formula to help out (especially when out alone, as was usual). She gave me a look of pity and said, “Well, at least you tried.” Sadly, this attitude is becoming more common online and in person. Friends of mine have reported being judged for purchasing formula or pulling out a bottle at a playgroup. A friend posted a picture of the formula she bought on facebook and many of the comments were on the benefits of breastfeeding, showing no regard to her situation. I’m well aware that the judgement goes both ways as I was asked to either cover up or stop nursing at a public pool, even though I was tucked to the side, showing less skin than many of the swimmers, and none of my friends in the pool who observed the scene realized I was nursing at that moment. I’ve also been told (online only thankfully), that breastfeeding until 2 is ‘unnatural’.

A lot of breastfeeding advocates believe the best way to encourage breastfeeding is to highlight the benefits and portraying it as something that you do in order to give your child an advantage. I’ve seen essays that argue that formula should be considered an inferior, damaging choice. Personally, as someone who really struggled to breastfeed and dealt with conditions such as mastitis multiple times, I didn’t find this attitude very helpful. Whenever I was thinking of quitting breastfeeding, it was those who were more accepting of my choices that kept me going strong.

Rather than condemn formula, give mothers the support they need.

Female bonobos observed helping mother give birth.

” During the birth event, which occurred at the Luikotale Bonobo Project field site, in the Democratic Republic of the Congo, the researchers discovered that wild bonobos do not give birth alone. The new mother, a female called Luna, was surrounded by two other female bonobos offering companionship and support.”

From here.

I asked a friend of mine, Sean Lee, about what he’s observed of bonobos and alloparenting. He said, “ Based on my own observations there is actually very little direct “helping” from other females in the form of carrying, nursing, etc. However, compared to chimpanzee females who GENERALLY range alone with their offspring, bonobo females are often in the presence of several other unrelated females w offspring of their own. This is a stark difference in social structure between our two closest living relatives and is thought to account for a lot of the other cool differences we see between them. I am interested in
whether this increased “gregariousness” of bonobo females relative to chimps increases
social opportunities for their bonobabies. If there are benefits to these early social opportunities, and if other females in the group contribute to these opportunities by playing, grooming, or just plain hanging out with other females’ kids, then I would say yes, bonobo females do indeed help each other out with childcare.”

Stop telling worried parents that Einstein didn’t talk until 4 and start giving them practical advice.

On parenting message boards, facebook groups, and elsewhere online, I see posts by parents concerned about the development of their children and, at one time, I was making those posts. Even in groups populated by well-educated, well-informed parents, it is quite common for these concerned to be brushed off as parental worry.  I’ve seen and received (and at one time been guilty of) comments such as:

“Every child develops at their own rate.”

While that is true, some children have developmental disabilities that interfere with their ability to learn. Many studies suggest early intervention can help protect against some of the debilitating effects of autism. The difference between my son before and after his diagnosis and therapy is night and day. Waiting would have only harmed his outcome. I have never heard a parent say that they wished they hadn’t sought out early resources for their child, but I’ve known plenty who wished they had.

“If the pediatrician isn’t concerned, then you shouldn’t be.”

After my son’s second pediatrician kept dropping the ball as much as his first, we moved to a third one. At our first visit, the new doctor asked if a referral had been put in to a developmental pediatrician. I had never heard of such a doctor before. Considering that many developmental pediatricians have a 9 month or longer wait list, the sooner a referral is placed, the better. If I hadn’t been able to get in early on a cancellation, my son would have missed 4 months worth of therapy. That might not seem like much, but it can mean the world to an autistic child.I know several parents who were put off seeking Early Intervention by a pediatrician who insisted everything was fine.

“Don’t contact Early Intervention unless there is a very serious concern or the pediatrician gives a referral. You’ll be taking resources from someone who needs them.”

My early concerns seemed so minor, I almost convinced myself it was all in my head, especially when my autistic son cleared his first Early Intervention screening. It nagged at me and ate at me and I requested a second screening and during that screening, I said every little concern I had, even though I felt foolish pointing out things that weren’t on their charts. That’s when they recognized some issues and he started services through the Early Intervention program. It was our long involvement with that program that allowed him to be diagnosed at 17 months. If I had waited, we would have lost valuable time. You might not know you need the services until you qualify for them.

In this informative reddit thread, the OP notes: In 15+ years of working with children, and 5 years of being a parent, I have never heard a parent say “I wish I hadn’t bothered getting that free Early Intervention assessment when I was worried about my kid.”

“Speech therapy can’t start until after 18 months/2 years.”

I see a lot of misinformation about when certain services can start. While lack of expressive language (how much they can speak) isn’t a concern until later, lack of babbling and receptive language (how much they can understand) is. My son was enrolled in speech therapy at 15 months due to lack of babbling and receptive language and other parents have begun even earlier. Even if your child isn’t behind enough to qualify for speech therapy, a good pediatrician can give you information on how to encourage speech. My son started occupational therapy at 10 months.

“They can’t diagnose autism until after 3.”

With a family history, children as young as 12 months have been diagnosed with autism. My son was diagnosed by the MCHAT at 17 months and that extra time has made a world of difference.

“All parents worry.”

Yes, to some extent, all parents worry about their children. I worried about the development of my neurotypical son and had him screened by Early Intervention. I’ve been concerned with his speech on 2 separate occasions and got a referral to a speech therapist from his PCM on one of those (he wasn’t delayed enough to need services), and the other time, I asked his twin’s speech therapist for more information on how to help him. Just as many other parents assured me it would, his speech suddenly exploded.

In my most active parenting group, many of us have been worried about all sorts of things, especially if we are first time moms. Most of us have expressed concerns about language and about 1/3 have had concerns about autism. Many experienced speech explosions and most of our children have been on a very normal trajectory. Still, in a group of about 50 moms, there are several of us whose children qualified for speech therapies, and 3 of us have had referrals to developmental pediatricians because of serious concerns. With rates of children diagnosed with autism climbing to 1 in 68, it is reasonable to assume that a diagnosis is possible, especially in larger groups.

Let me be very clear. I’m not saying that some parents aren’t worrying unnecessarily. I’m not saying that all parents who suspect their child of having autism are right. I am not saying that reassurances should never be stated or parents shouldn’t mention speech explosions. I am simply saying that I, and many other parents who have good reason to be concerned, are regularly dismissed, and that posters focus too heavily on reassurances instead of giving practical advice.

Instead of telling parents about Einstein, here is what we should be saying:

“Have you mentioned your concerns to the child’s doctor?”

Even the least informed pediatricians will run a basic hearing test and examine the child to make sure chronic ear infections or something else isn’t getting in the way of development.

“Have you taken the Ages and Stages Questionnaire (ASQ) or something similar?”

Not all pediatricians use these measures, but they should. The ASQ [link to PDF of master list] is a parent-completed child monitoring system that can help identify areas in which the child is lagging compared to peers. It is easy enough to fill out and score (I will gladly help anyone who is struggling). If a child is scoring in the black, a call for Early Intervention should be placed immediately. Alden has scored in the black and not qualified for Early Intervention, so it is not necessarily a sign of a problem, but many children with developmental disorders start out closer to their peers and a delay should be examined by a professional.

“Does your child share any characteristics mentioned in lists of early warning signs of autism?”

My autistic son smiled and imitated before his neurotypical twin and had excellent eye contact from a distance. Since I didn’t know much about autism, I thought his early and often social smiles, imitation, and excellent eye contact as long as I wasn’t very close to his face meant that he didn’t have autism. When my boys were around 9 months, I watched this video on early signs of autism and, even though my boys were younger than the children depicted in the video, I worried that Corwin had autism based on his preoccupation with certain toys, lack of response to his name, and lack of joint attention. I wish I hadn’t let people tell me it was all in my head or that all parents worry. Once he was closer to a year, I found this list of early warning signs very informative. Although many people around me thought it unlikely that he had autism, as he grew older and experienced his first regression, it was harder to deny, and his diagnosis came as a relief. I’ve asked other parents of special needs children what they wished they had known in those early years and the two most common phrases I hear are “trust your instincts” and “don’t wait”. Some people in evidence-based groups are distrustful of parental instinct because it has led to a complete rejection of modern medicine, but as long as a parent is following evidence-based practices, parental instinct should be respected.

I remember vividly a thread I started on my concerns with Corwin and a mother, who knew me well and had concerns about her own son, broke free from the regular refrain of “don’t worry” and said, “I trust your judgment. If you believe something is wrong with your son, then something is.” I’m so thankful that she didn’t dismiss me. I am so glad that I had a few people in my life who helped me push for my son.

“Have you tried these various techniques designed to encourage speech/eye contact/crawling?” In her AMA on reddit, Temple Grandin said that the worst thing you could do for an autistic child is nothing. Even for a neurotypical child, waiting is the last course of action that should be suggested. There are plenty of techniques available for free on the internet that can help a parent teach a child to speak, learn to crawl, learn to drink from a cup, or any other milestone. With my neurotypical son, we didn’t just wait and see, but we started a mild form of speech therapy that was easy to do at home and prompted language. For children in the gray areas of the ASQ, the proper response should not be “wait and see”, but “guide and monitor”. The ASQ contains information on suggested games and activities to help children in their development and many pediatricians have further guidelines and suggestions that can help. An Early Start For Your Child With Autism is an excellent book that all parents can use to help infants get a good start.

Don’t dismiss all parents as needlessly worrying and tell them to wait. Like Einstein, Temple Grandin didn’t speak until she was 4, but early and strong intervention methods are responsible for the success she has today. Reassurances do have their place and can be helpful, but temper them with information.

How to set up a play area and encourage speech in young or speech delayed children [Part 2]

Setting up the play area

This is the second of a two part series on encouraging verbal communication and interaction in young or speech-delayed individuals through play. This section covers how to set up the play area to promote enriching play for children under the age of 5. The previous section can be found here.

While I like having one room in the house that contains most of the indoor child toys, this doesn’t need to be done in one particular part of the house, although it helps if you have an area that can meet your child’s sensory needs, especially if your child has autism. An over or under stimulating play room will make it hard for the child to concentrate. Even neurotypical children are easily overstimulated by busy, noisy play areas as Harvey Karp notes in The Happiest Toddler on the Block. For the sake of ease of conversation, I’ll use playroom to refer to the area where the bulk of the toys will be kept.

When deciding how to set up the playroom following the principles on encouraging enriching play laid out in the wonderful book An Early Start For Your Child With Autism, I kept a few things in mind.

I wanted to use the playroom toys to enhance communication with joint activities.

I got rid of toys that were limiting or could only be used one way, and took the batteries out of all of the toys but two puzzles. I reduced the overall number of toys available at one time since both neurotypical and autistic children are easily overwhelmed by too many choices. This is true in adults too. While in An Early Start, they recommend only having 6 types of toys out at a time, I found this a bit too limiting to try immediately, so I started reducing slowly, then began reducing more once I got used to it. The toys we aren’t currently using are kept in a large bin in the garage. I put groups of toys in bags so that its easier to switch them out. My boys are engaging far more with their toys since we began this process.

The bin in our garage with the toys we aren’t currently using.

I wanted the boys to use imagination and creatively involve their toys in different activities.

I also wanted to promote substitution play, which is when you use an object to represent something else, for example, pretending blocks are cars or using a stacking cup to give a stuffed animal a drink. I decided to keep stuffed animals, blocks, a little people play set, and our pretend kitchen items out so that they could be used in other activities for imagination play. Since I did have a lot and my overall goal was cutting down, I reduced the number available of each for easy access and to facilitate clean up. It may seem limiting to reduce the amount of toys available, but I’ve found that it actually increases the amount and types of toys the boys play with.

These toys plus books and stuffed animals are what they have available without asking.

I wanted to build in barriers to some of the toys in order to increase interaction opportunities.

An Early Start explains how giving your child as many interaction opportunities as possible increases the ability of the child to use interactions to communicate through verbal or nonverbal communication. For example, the authors suggest putting toys in clear boxes or bags so that the child has to communicate which toy they wish to play with. Most of my speech and ABA therapists have done this as well because it helps communication so much. Imagine a board puzzle simply sitting on a low shelf. The child can select and play with the puzzle without any direct contact with another person. In order to interact, the caretaker can narrate each piece when the child selects it, but the play doesn’t naturally become a joint activity. For a 5 piece puzzle, that’s 5 acts of communication, but the child isn’t very engaged with the caretaker, and the caregiver has to be careful that they are referencing the right piece if a child picks up more than one at a time.

Take the same puzzle and place it in a bag. Now, the child indicates to the caregiver that they want to play with the puzzle or the caregiver can offer the puzzle as part of a choice (1) . The caregiver requests that the child help to open the container with the puzzle and narrates the opening action (2) as well as narrates the child removing the puzzle from the container (3). Each piece is individually handed to the child from the bag and/or the child is offer a choice between puzzle pieces (8). When the child is finished with the puzzle, the caretaker asks if the child is finished (9) and when the child indicates yes, they encourage the child to put the pieces back in the bag, narrating while the pieces are returning (14) and the puzzle is put back on the shelf (15). We’ve tripled the interactions and designed a more engaged play session for the child.

This particular type of bag, with the little slider, is a lot of fun for kids to open.

The authors of An Early Start suggest dividing play up into four parts in order to promote joint activities, which can really help a child learn. The four parts are

1. Initiation/setup
2. Theme
3. Variations
4. Closing/transition

The initiation or setup is when someone picks a toy. Either the caregiver can invite the child to play with something, or the child can ask to play with something. The theme is when two or more people participate in a particular activity together, such as building a tower with blocks or working on a puzzle. Narrate the theme as you engage with it. For example, if you are playing with play dough, you can roll a ball saying, “Ball” and then make a snake while hissing like a snake. Narrate what you are doing as well as what your child is doing, but pay attention to engagement so you can reference what your child is currently observing.

Since playing with toys the exact same way can be boring and lead to disengagement, variation is introduced. I like to add a loud dramatic noise to make the boys laugh and capture their attention. After we roll our balls or snakes, I dramatically smash mine while saying, “Smash! Smash! Smash!” The boys find this loud destruction funny and learn these words quicker. There’s a term called spotlighting, where you make a particular new word the focus with dramatic actions or emphasis. This is naturally built in to a lot of nursery games and rhymes with lots of repetition and physical actions to make certain words stand out.

When you or the child starts to get bored even with variation, you put the toy away together. It is easier to do this if the toys are naturally placed in bags or boxes. The authors of An Early Start recommended putting all toys in clear boxes, but I found this a bit imitating and I like to be able to spontaneously pull in a few toys such as the play food.
You can do this set up all over the house.

Bathroom toys organized by type.

The magnetic numbers and letters grouped. You can see we lost a lot of number magnets before we started doing this.

Not only has this increased communication skills, but its a great organizational tool. I have a bunch of items that I bought at the craft store that kept getting scattered around the house. Sorting them into bags made a huge difference compared to just putting them into their sorting containers.

Then you can place the bags in a giant ziplock bag or, as I later discovered, in the container that you use for sorting. I like to keep old wipes boxes for this purpose.

Then the sorting objects and receptacles can be stored together.

Other than the few toys I’ve selected for imagination and substitution play, everything else is placed up high.

The boys can reach the books easily, but must ask to play with anything else.

I wanted the play room to be engaging, but not difficult to keep clean.

While cleanliness has nothing to do with communication per se, other than a less cluttered environment reduces stress for toddlers, the less time I spent cleaning up after the boys, the more time I spent engaging with them. It was also easier to get help cleaning once I started requiring that the toys placed up high be put away before another one was brought down. By the end of the first day, the boys were already starting to help me clean up without me explicitly requiring it of them. Now, Alden will signal he’s finished by putting things away.

One difficulty with multiple children is that one won’t be finished with an activity while the other one wants to move on to the next. I work around this by allowing only one of a certain type of activity; for example, either blocks or megablocks, but not both, and also having other options available at all times, such as the play foods and animals.

With multiple items out, it’s harder to keep clean compared to one activity at a time, but even when I do two at once, it’s much easier to restore the playroom to this state:

Along the walls I have key points from the various chapter of An Early Start.

When I started this arrangement, I had a lot of trouble putting toys in the bin in the garage outside. Although logically, I knew they weren’t disappearing forever, I kept thinking about how my boys loved those toys. However, I’ve seen first hand how this actually promotes the toys instead of inhibiting. Each week, I end up putting a greater percentage in the bin outside. When I look at the picture of the playroom I posted above, I’ll probably cut down how many toys I have out by 1/3 next week. I also plan on moving more to shelves since my boys are having such great improvements with language and this really encourages them to enjoy their toys instead of scattering them all over the house.

While every child is different, these simple techniques have done wonders for both my boys. Corwin, my autistic son, has come amazingly far with speech to the point that he went from absolutely no language at all to within a normal range in half a year, even though I have kept it play-like and fun the entire time. Alden went from slightly speech delayed (but not enough to require services), to well caught up. I highly recommend this system to any parent of a young child.

Please feel free to share your stories of what worked for your family. I’m always looking for more tips and tricks to promote communication.

How to set up a play area and encourage speech in young or speech delayed children [Part 1]

This is the first of a two part series on encouraging verbal communication in young or speech-delayed individuals through play. This section covers how to encourage verbal communication in general. The other one can be found here.

One of the most common concerns I see posted on parenting message boards is lack of or delayed speech. It is common for even well educated individuals to respond glibly with statements such as, “Einstein didn’t talk until 4. Nothing can be done to help speech until age 2. If your pediatrician isn’t concerned, then you shouldn’t be concerned.” If you have concerns about your child, especially if they are between 4 and 60 months and score in the black on the Ages and Stages Questionnaires [PDF for the master list] then put in a referral to Early Intervention. Even if your child never qualifies for speech therapy, there is plenty you can do to build a healthy environment to encourage speech. I was inspired to write this guide after seeing so many parents told to just wait it out. While most of what I’ve learned about speech has been drawn from books meant to help my autistic son, the techniques have really helped my son’s neurotypical twin as well. If you do have a young child with autism, I can’t recommend An Early Start For Your Child With Autism highly enough.

As my sons just recently turned 2 and this set up works well for us now, this guide, especially the set up of the play area, may not be as helpful for parents of older children, but the basic principles will remain the same at any age. You can start as early as 2 months, when most children are babbling and responding back to your communication.

In encouraging speech, there are 3 basic principles I’ve found most helpful:

1. Follow your child’s interests
2. Reduce competition for your attention
3. Build in natural barriers

Follow your child’s interests

A lot of people, even trained ABA therapists, approach learning in a way that discourages it. They study the child to see where the child is behind, make a decision to teach the child X, then try to push X on the child without any regard for the child’s interest in X or in their manner of teaching X. I’ve heard of therapists trying to teach a toddler to identify and name colors by forcing them to sit in a chair and point to colored flash cards while refusing to let them leave the chair until they’ve identified an appropriate number of colors. This way might result in a child who learns their colors, but it will be far more of a battle compared to when learning is kept fun and in the context of play. Think of how much easier it is for you to learn the rules of a complex game compared to a complex textbook problem. If learning is kept fun, the child will engage with you for far longer and on a wider variety of subjects.

In The Spark, Kristine Barnett writes about how she was told that her son might never learn to tie his shoes. His therapists wanted to put aside his favorite tools in order to focus on memorizing rote actions designed to teach him tasks like tying his shoes. She found this approach entirely backwards. As she explains in her book, if you lived in a fabulous tree house and people were constantly trying to drag you out of the tree house to engage in boring tasks, you wouldn’t want to pay attention to them, would you? You are much more likely to engage with someone who will play with you in the tree house first or demonstrate the tasks inside the tree house.

A very simple way to encourage speech is to follow the child around and narrate their actions. For example, whenever my boys get on their trampoline, I chant, “Jump! Jump! Jump!” in time to their jumps. As the authors of Nurture Shock note, pointing things out isn’t nearly as helpful as letting the child play and describe what they point to or pick up because parents often make mistakes when they make assumptions about what the child is trying to say or paying attention to. By following your child’s interests, you can gain more confidence about what currently has their attention. At the same time, don’t feel that you must be speaking all the time. Constantly talking to your child doesn’t help language acquisition nearly as much as responding when the child initiates it. Even physical touch can help. Give your child breaks and alone time to babble since intermittent reinforcement is more powerful than constant. It’s also very helpful to regularly speak on the same or just above the child’s level, especially speech delayed children. If the child isn’t saying any words, use a lot of one word sentances. Once they start saying words, then you start using two word sentences, and so forth.

Children tend to love silly voices and exaggerated words. Often parents think that they must speak the word as clearly as possible, but I’ve found better luck when I exaggerate some words in order to make them more fun and interesting. For example, when the boys are pulling on something, I stretch out pull and put a bit of stress in my voice to emphasis the combination of word and action. I taught them up and down by holding them up high and saying “up” in a high pitched voice, with down the reverse. Even now, they think it is a fun game to jump up while saying, “Up!” in a high voice and “Down!” while crouching down.

Animal sounds and sound effects are great first words because of their naturally fun nature and how easy they are to make. As one of our speech therapists often said, “If you can spell it out, its a word.” Whee! was an early word for both boys because they quickly learned that if they said it, daddy would toss them in the air. As the author of Talking Kids notes, “[t]he key is to find something your toddler loves and then use the magic words over and over right before the fun begins”. We taught the boys to count by playing a game where we pretend to sleep on the floor and, with our eyes closed, slowly count to 3. After 3 is reached, we ‘wake up’ dramatically and tickle them. My boys love this game so much, they will start counting as soon as I get in position on the floor.

Another technique that helps is to pick out languages that help your child best say the word they are trying to say. Follow what is easiest for your child to manage. For example, both struggled with saying airplane, but they could sign it easily, so we used the sign first, then moved to the word. Grapes were very hard to say and scaffold, which is when you start with part of the word and later add more to it. Motorcycle was easy because we could go “moto” -> “motor” -> “motorcycle”, but grapes would be apes -> rapes -> grapes. We started using “uvas” instead because both boys could pronounce it straight away. The more words your child has, the more easy it is for them to expand their vocabulary further.

My autistic son, Corwin, learned to identify and name parts of my car before he learned to identify and name members of our family. He could pick out a backhoe and a grader before he could pick out his colors. We used his love of vehicles to teach him about colors and numbers. Once he learned how to say, “yellow bus” he was soon describing other yellow objects.

The boys learning about colors by sorting cars

At the same time, some toys and actions can interfere with your child’s ability to interact with other individuals. Like many children with autism, my son is obsessed with toys that make a noise or a song when you push a button. It took us a while to realize he was stimming with the toys. When we tried to play with him with some of these toys, he would work to prevent us from sharing the experience because we were interrupting the particular pattern he wanted to hear. On the advice of a speech therapist and An Early Start For Your Child With Autism, we removed batteries from nearly all of our toys and got rid of the push button/play sound toys. As the speech therapist pointed out, the boys are more likely to make the vehicle sounds when the vehicles aren’t making the noises for them. It’s important to select toys that encourage communication rather than discourage it. We also removed all toys that could only be played with one particular way unless we were using that toy in a particular therapy session. An Early Start has a wonderful guide to selecting toys that encourage communication and joint play. Amongst others, they suggest blocks, crayons, dress up clothes, play dough, books, swings, stickers, dolls, etc. Your participation should be easy to integrate.

Reduce competition for your attention

It’s important to select toys that allow you to participate in play, especially for autistic children, because this joint participation is most conducive to learning. We’ve had a few speech therapists due to moves and the current one is absolutely amazing at getting my son to learn words because she finds opportunities for language and joint play in almost every type of toy or activity. Something like a swing might seem limiting at first, but there is a lot you can do with a swing. You can pull the child up high and say, “Ready… set… go!” and release them just after the go. You can have them give you high fives as they swing towards you. You can pretend that their feet are kicking your hands with upstrokes. Finding the right combination of toys can really open up a child’s language.

At the same time, simply having the toys that your child enjoys on hand won’t be enough if your child can’t concentrate for other reasons. For autistic children especially, it is important to get enough sensory stimulation or understimulation so the child can concentrate. Some child need a bland, quiet play area, while others will do better if given lots of items to touch and bounce between. Both of my boys get sensory diets with lots of physical exercise and tumbling. Language doesn’t necessarily need to come after sensory needs are met. Integrating language into sensory activities is a great way for children to learn how to ask for their sensory needs.

To encourage the child to look at your mouth, find their comfort zone and place yourself in it. For children with autism, you will have to be more careful about where you sit since many children with autism find eye contact too intense to maintain for long if at all. I encourage my son Corwin to look at my mouth, but not my eyes, because I can tell it bothers him to look at my eyes, especially when up close. When Corwin requests games like Itsy Bitsy Spider, I sit farther back than I do with his twin, Alden. When I read books to them, I either sit facing them with the books near my mouth, or I sit one in my lap and we take turns pointing at things and discussing what we see on the page. When I sign, I sign with my hands as close to my mouth as possible so the boys can see the combination of mouth and hand movements.

While I’m not someone who completely eschews screen time for children, especially since an app helped teach my son to point, and many autistic children learn to speak through ipad apps, it is important to note that television can be very detrimental to language learning, even if it is only on as background noise. And while I do have a few pandora playlists for the boys, I try to keep them on just in the car or when we don’t have the ability to fully work on joint activities. When we are traveling or waiting at the doctor’s office, I like to use apps such as Peekaboo Barn and Endless Alphabet because I can interact with my boys with the apps when I have a moment, but they sustain interest when I can’t give one on one attention.

Another way to reduce competition for your attention is to limit the number of toys available. In An Early Start, they recommend having only 6-8 types of toys available and rotating through them frequently. With many toy options, it is harder for children to concentrate on the task at hand and for caregivers to understand which exact toy the child wants.

Build in natural barriers

As caregivers learn to read children, children learn to read them as well, which can inhibit communication because a lot of actions are done on assumption without waiting for prompts. In the excellent book on Engaging Autism the authors talk about how reducing verbal communication can really help promote nonverbal communication in an autistic child. They say that parents are often hesitant to do this because they fear it will hurt the child’s overall communication, when the opposite is true. Often times, we attribute more understanding to our children than they actually have and talking a step back can help us recognize their weaknesses.

Imagine you are about to go to the store with your child. As you are getting ready to leave the house,  you say to your child, “Put on your shoes, we’re going to the store.” When your child does so, you might assume that they understood what you told them. In fact, the child might have seen the keys in your hand and assumed that shoes would be the next logical step. When Corwin was diagnosed with autism, he showed no receptive language, which means he didn’t understand any words; however, he knew that if I put on his jacket, he should go get his shoes because we were about to go out the door and he needed his shoes to leave the house. In order to teach children with autism how to read nonverbal communication, we reduce prompting as much as possible, which means that we reduce verbal language so the children are reliant on our nonverbal language. To do the reverse, you remove as much nonverbal language as possible. Many parents overestimate their children’s receptive language, especially in very young children. They speak a long sentence and their child appears to understand all of it, when the child had simply reacted to a word or two and the context of the sentence. A child needs to first have receptive language (how much they understand) before they can have expressive language (how much they can speak). Testing your child’s receptive language can reveal weaknesses that might remain hidden otherwise.

Along these lines, another thing that parents can do to encourage speech is to put in barriers for children in play so that greater communication is required in order for play to occur. That brings me to the second half of this piece: setting up the play area.

Did better mothering defeat the Neanderthals?

More and more research shows that Neanderthals were as inferior in cognition as originally thought. A five-year project out of Kochi University of Technology in Japan examines factors that contributed to the extinction of the Neanderthals, and posits that the differences in learning was the key factor. Although invention and tool use is normally associated with men in human culture, studies of non-human primates reveals that mothers are more likely to invent and pass their inventions on to their offspring. This is also true in other species, such as dolphins.

Evidence to date indicates that Neanderthals were patrilocal, meaning the females went to live with their mate’s family; whereas early modern humans appear more likely to have been matrilocal, the male moved to the female’s family. How would gender dynamics and kinship structure influence the competition between species? Quite dramatically!

One quibble I have with this article is that the author confuses lack of exclusive breast feeding with weaning. While the Neanderthal child did wean earlier than a human child would, the Neanderthal child was introduced to solids at 7.5 months, not weaned, which took place at 1.2 years of age, and the cessation was abrupt, which means it may not have been done by choice.

It is also worth noting that patrilocality is more common in modern human records and, if humans shifted in this process, what prompted that change?

Autism 101: Hating Your Autistic Child

Before my son was diagnosed, my view of autism was overwhelmingly negative. I saw it as something that needed to be cured. Ray Hemachandra has written a beautiful piece on why it is not OK to say that we hate autism. Really thought provoking and worth considering, he explores how a person can accept autism, but still seek therapy for an autistic child. I don’t agree that all parents who say, “I hate autism” are abusive. Many parents of autistic children lack the social support and help they need for their children. Many lack the experience with older autistic adults to understand how autism can be a benefit rather than a curse. Greater awareness is desperately needed, but let’s not tear down those who are struggling.