ASAN tilting at windmills yet again

ASAN recently released a statement, ending its partnership with Sesame Street. Why? According to their statement:

Its latest PSAs featuring Julia promote Autism Speaks’ “Screen for Autism” initiative and their resource for parents of newly-diagnosed autistic children, the 100 Day Kit. Like much of Autism Speaks’ recent advertising, these PSAs use the language of acceptance and understanding to push resources that further stigma and treat autistic people as burdens on our families. The 100 Day Kit encourages parents to blame family difficulties on their autistic child (“When you find yourself arguing with your spouse… be careful not to get mad at each other when it really is the autism that has you so upset and angry”) and to view autism as a terrible disease from which their child can “get better.” It recommends compliance-based “therapies” and pseudoscientific “autism diets,” but fails to educate families about communication supports. It even instructs parents to go through the five stages of grief after learning that their child is autistic, as they would if the child had died.

Now, I took a look at that 100 Day Kit and the part where it supposedly “encourages parents to blame family difficulties on their autistic child”:

Try to direct your anger towards the disorder and not towards your loved ones. When you find yourself arguing with your spouse over an autism related issue, try to remember that this topic is painful for both of you; and be careful not to get mad at each other when it really is the autism that has you so upset and angry. Try to have some semblance of an adult life. Be careful to not let autism consume every waking hour of your life. Spend quality time with your typically developing children and your spouse and refrain from constantly talking about autism. Everyone in your family needs support and to be happy despite the circumstances.

As you can see, nowhere does it actually say to blame the child. Notice that it says “when it is really the autism” and not “when it is really your autistic child”. So how is it that the toolkit is encouraging parents to blame family difficulties on their autistic child? The only way it does that is if the reader did not comprehend the passage or if they think that autism is inseparable from the person; that autism is an identity.

ASAN also states that the toolkit encourages parents to “view autism as a terrible disease”. However, the only mention of disease in the toolkit is when it mentions celiac disease, the U.S. Centers for Disease Control and Prevention (CDC) and when describing psychologists as a “professional who diagnoses and treats diseases of the brain, emotional disturbance and behavior problems”. The only people who are alluding to autism as a disease are ASAN themselves.

According to ASAN, the toolkit recommends pseudoscientific “autism diets”. However, the toolkit only mentions one diet, the Gluten free, casein free diet (GFCF), and only if the autistic person is affected by gluten or casein in the first place.

Much has been said about the gluten free, casein free (GFCF) diet and its use to help individuals with autism. Many families with children newly diagnosed with autism wonder if it’s something their child should follow. The GFCF diet was first developed for people with celiac disease, a disorder that involves a severe reaction to gluten in the diet. Gluten is found in wheat products such as bread and other bakery goods but also in a wide variety of other food products. Casein is a protein most associated with dairy products and has potential to cause severe reactions in certain individuals. When used appropriately, the GFCF diet is safe and can help avoid these severe health problems.

The theory behind its use in autism is that if a person is having GI responses to these products, the resulting inflammation may damage the lining of the intestine and as a result lead to absorption of molecules that are not normally absorbed by healthy intestines. Some evidence suggests that these molecules or the inflammation they cause can interact with the brain in ways that cause problems such as anxiety, mood abnormalities, mental difficulties and perhaps worsen the behavioral symptoms of autism. That said, while the GFCF diet has been used in the autism community for a couple of decades, there is minimal evidence that it improves autism-related behaviors.

Families choosing a trial of dietary restriction should make sure their child is receiving adequate nutrition by consulting his or her pediatrician or a nutrition specialist. Dairy products are the most common source of calcium and Vitamin D for young children in the United States. Many young children depend on dairy products for a balanced, regular protein intake. Alternative sources of these nutrients require the substitution of other food and beverage products, with attention given to the nutritional content. Substitution of gluten-free products requires attention to the overall fiber and vitamin content of a child’s diet. Vitamin supplements may have both benefits and side effects. Consultation with a dietician or physician is recommended for the healthy application of a GFCF diet. This may be especially true for children who are picky eaters.

About the five stages of grief, here is some context from the toolkit:

You are never prepared for a diagnosis of autism. It is likely that you will experience a range of emotions. It is painful to love so much, to want something so much and not quite get it. You want your child to get better so badly that you may feel some of the stages commonly associated with grieving. You may “revisit” these feelings from time to time in the future. Part of moving forward is dealing with your own needs and emotions along the way

Notice that it says that “you may feel” and not “you must feel”. Telling parents of feelings that they may feel is a far cry from instructing them to feel things, as stated by ASAN.

As mentioned in my other blog posts, there is an ASAN tradition to put out a flyer mischaracterising Autism Speak’s financials every Autism Awareness Month. So it is a fact that ASAN do not like Autism Speaks very much. But here they are now with what seems to be a complete failure to understand English.

Advertisements

Neurodiversity: The Problem of Autism as Identity

Edited from original

In honour of Autism Awareness/Acceptance Month, let’s begin by asking a simple question:

What is autism?

Unfortunately, the answer to this simple question is more complicated than expected. Below is the dictionary definition:

Oxford Dictionaries define it as: “A developmental disorder of variable severity that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behaviour.”

The Autistic Self-Advocacy Network (ASAN) defines it as: “Autism is a neurological variation that occurs in about one percent of the population and is classified as a developmental disability.”

On the surface, it would seem like the two definitions are similar. However, they could not be more different. The dictionary definition seems to be based on the diagnostic criteria for autism spectrum disorder. The ASAN definition is based on the concept of neurodiversity.

What is neurodiversity?

Judy Singer, the originator of the term “neurodiversity”, defines it as: “Neurodiversity for me is the timeless and incontrovertible reality that every single living being is unique, and that no two human minds, (actually mind-body complexes), are the same.”

I agree with her. Everyone is unique. What she has said is clearly a fact of nature. So what’s the problem? The problem comes when people start to associate natural with valuable.

“Neurodiversity is a natural and valuable form of human diversity,” Nick Walker states. His opinion is so respected that it appeared in an editorial published in a peer reviewed journal. But there is a flaw in this neurodiversity paradigm. The flaw is this: just because something is natural does not make it valuable.

The concept of value is relative. What might be valuable to you might not be valuable to me. A $100 bill might be valuable to someone who only has $100, but it is less valuable to someone who has $100,000,000.

I would assume that neurodiversity is meant to be valuable to the person who is neurodiverse. It wouldn’t make much sense otherwise. But neurodiversity is not always valuable. Take Spinal Muscular Atrophy (SMA) for example. It is an inherited condition (i.e. natural) that affects motor neurons. If you take the literal meaning of “neurodiversity”, meaning neurological diversity, then SMA would be part of it as it affects neurons. Unfortunately, it is also the leading genetic cause of infant deaths. SMA has zero value to someone who dies from it. But it could be argued in a perverse, roundabout way that the effort to cure SMA is advancing our understanding of genetics and is therefore valuable to humanity.

Is diversity itself valuable? There is such a thing as too much diversity, as evidenced by the introduction of rabbits Down Under. Instead of increasing biodiversity, rabbits became a significant contributor to species loss in Australia instead. Attempting to increase diversity without taking into account the balance of a system is just reckless.

So, what is autism?

Nick Walker states that “autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologized in the past).”

It seems to me that subscribers to the neurodiversity paradigm also tend to view autism as an identity. And if autism were an integral part of a person, like ethnicity or sexual orientation, then any attempt to research its cause and treat its symptoms would be impossible. It would be like trying to cure homosexuality or Asianness.

But this view also creates problems. When asked to define autism, most people who view autism as an identity tend to give an answer that is similar to the definition given by the Thinking Person’s Guide to Autism (TPAG): “Autism is a naturally occurring human neurological variation and not a disease process to be cured.”

The problem with the phrase “Autism is a naturally occurring human neurological variation” is that it is essentially meaningless. Isn’t every human being in the universe a “naturally occurring human neurological variation”?

“Autism is a neurological, developmental, and pervasive way of being,” Chrysanthe Tan wrote. Even though I understand each individual word, I cannot understand what she is trying to say when she puts these words in this particular order. What exactly is a neurological way of being? A developmental way of being? A pervasive way of being?

“I was going to write about what autism is, but as I wrote it transmogrified into what autism isn’t,” Rhi wrote in a blog post.

It seems to me that one of the problems with viewing autism as an identity is the inability to provide a coherent definition.

In fact, most definitions of autism as identity describe its cause first (genetic, natural, etc.) before going on to describe a set of behaviours. ASAN’s definition lists the following: Autistics have different sensory experiences; non-standard ways of learning and approaching problem solving; deeply focused thinking and passionate interests in specific subjects; atypical, sometimes repetitive, movement; need for consistency, routine, and order; difficulties in understanding and expressing language as used in typical communication, both verbal and non-verbal; and difficulties in understanding and expressing typical social interaction.

In short: Autistics see/hear differently; learn and problem-solve differently; think with deep focus and develop passionate interests in specific subjects; move atypically and sometimes repetitively; need consistency, routine, order; have difficulties understanding and expressing language and social interaction. In the end, the most sensible way to define autism is as a set of behaviours.

Viewing a set of behaviours as an identity can lead to its share of problems as well. For example, statements like “If you love and accept your autistic child, you can’t hate #autism. You can’t.” only make sense when autism is an identity. Contrary to what Rachel said to Bruce in Batman Begins, people are not solely defined by what they do. People who punch someone else while undergoing a tonic-clonic seizure aren’t guilty of assault. It’s understood that they aren’t responsible for their behaviour while having a seizure. The person they are underneath, the intention behind the actions, matters.

So what really is autism? I think the definition by Autism Speaks (AS) is the best one so far. They state that: “There is no one type of autism, but many. Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication.”

The chart below was taken from a lecture from Elliott H. Sherr, MD, PhD, from the Institute of Human Genetics at UCSF, and it shows the many different causes of autism.

From https://www.youtube.com/watch?v=updlYt9qtn

Each category represents lots of different causes. Just to give you an idea, according to SFARI, at least 84 different genes have been implicated in causing autism that are also part of a syndromic disorder, which is only 10% of the pie chart.

A majority of cases are idiopathic. Basically, science still has no idea what exactly is causing a majority of autism cases. And while a majority of autism cases are caused by genetics, there are environmental causes too. Whether it is purely environmental or a combination of environment and genetics, these make up 30% of the pie chart.

AS has made it its goal to seek the causes and types of autism, with the goal of translating these discoveries into personalised treatments. As one of the largest funders of autism research in the U.S, it can help advance our understanding of autism. And I think everyone can agree that understanding is the first step towards acceptance.

Tragically, TPAG tells its readers not to support AS, because AS does “causation- and prevention-oriented research”. ASAN published flyers telling people not to donate to AS as well, saying that only a tiny portion of its budget goes towards helping autistic people and their families. In doing so, ASAN ignored the entirety of AS’s science expenditure. Why? I don’t know. Maybe because if autism were an identity, then any attempt at treatment would be a personal attack.

In 2014, 15 infants underwent gene therapy for SMA. As of Aug 2017, 100% of them were still alive, compared to a historical 8% survival rate.

Gene therapy might be able to help autistic people whose autism stems from a monogenic or syndromic cause, who also tend to be on the severe end of the spectrum. But, if autism is an intrinsic quality of a person, akin to ethnicity, then gene therapy would be eugenics. The concept of autism as identity is untenable. This is neurodiversity eating itself.

Let’s do some proper math! 2019 edition

The Autistic Self-Advocacy Network (ASAN) has published yet another flyer with questionable math. For the rebuttal of the other points, see this post.

Now, let’s take a look at that 1.6% figure. According to Autism Speaks’ 2017 990 form, they gave away $1,355,073 in grants in the Awareness, Family Services, Advocacy program.


They also spent a total of $42,861,302 that year.

1,355,073 / 42,861,302 = 3.16%.

As we can clearly see, this is not 1.6%. But I think I finally figured out how they arrived at 1.6%. I think they looked at the Schedule I part of the form.

First, let’s sum up all the grants labelled Family Services.

17,500 + 9,000 + 5,130 + 15,000 + 7,500 + 5,040 + 5,487 + 7,000 + 8,000 + 9,000 + 60,000 + 5,980 + 6,000 + 5,440 + 404,535 + 6,000 + 7,000 + 5,250 + 6,000 = 594,862.

Now, we add the two financial assistance grants.

594,862 + 48,433 + 57,600 = 700,895.

Take this and divide by the total expenditure.

700,895 / 42,861,302 = 1.63%.

However, this is clearly wrong. As stated in Part II of Schedule I, only grants of more than $5,000 are reported in this section. By taking only figures reported in this section into account, ASAN disregarded $654,178 in grants.

ASAN should know how this part of the form works. Their own 2017 990 form also has a discrepancy between the figure reported in program grants and the figure in Schedule I.

Again, ASAN has used a very strange definition of “helping autistic people and families”, which in this case seems to mean non-scientific grants of more than $5,000. Let’s use this silly metric for a moment.

20,000 / 682,845 = 2.93%. That’s not much better than AS’ 1.63%.

Now, let’s give both charities the benefit of the doubt and just use the figure reported under Part III Section 4a.

25,500 / 682,845 = 3.73%. That’s still not much better than AS’ 3.16%.

This metric used by ASAN is so silly that even they are crap at it. But most importantly, it ignores the entirety of AS’ science grants. Surely scientific research helps autistic people and their families?

Let’s do some proper math! (1,355,073 + 6,717,284) / 42,861,302 = 8,072,357 /
42,861,302 = 18.83%.

AS spent 18.83% of its budget in grants. ASAN spent 3.73%. Consider this fact.

The Twitterverse: The Autocannibalistic Entity

So it came to pass that I stumbled upon a strange and curious dimension, the Twitterverse. Ash, a gaming streamer, announced that he would become an ambassador for Autism Speaks, in effect donating half of his stream income towards the goal of helping autistic people.

Lo and behold a crowd of people bearing the #actuallyautistic hashtag crowded around him in protest.

“Autism Speaks is a hate group!” said @solestria and thirty-nine people repeated it and four hundred and seventeen people smiled.

“The majority of their funding goes towards researching in utero testing so that they can screen us out before we’re born,” said @AutisticMadeArt but only ten parroted this while a hundred and thirty-six grunted their pleasure at hearing this.

“Autism Speaks gives less than 5% of the money it raises to help existing Autistic people and their families,” said @sorkabeth. This was echoed nineteen times and eighty-six felt better after hearing it.

Was it really true? I surfed the waves of the interdimensional network and summoned Autism Speak’s financial statement. No it was not true.

“Don’t know why people get so hung up on one small part of their finances when they really spend a majority of their budget on Awareness, Advocacy & Family Services,” I said to Ash, not sure if he would be able to hear me, not sure if anyone would. “They were a really bad organisation but they seem to be doing better now.”

“That’s not even the tip of the iceberg when you’re discussing what’s wrong with Autism Speaks,” @artfulretro said to me. Three others liked what she said.

Woo! Someone spoke to me! I wasn’t sure anyone would even care about what I had to say. But I guess this is how the Twitterverse works. By some strange logic, anyone can say something and be heard, even amongst the din of what must have been a thousand voices.

“I actually agree with you that they did some horrible things in the past,” I said to @artfulretro. “But looking at their youtube channel and website show that they are all about autism acceptance and neurodiversity nowadays. In your view, what else must they do to show that they have changed?”

“have you seen this?” @artfulretro replied, and conjured up a video from the Youtube dimension.

I watched the video, hoping for an answer to my question: “What must Autism Speaks do to show that they have changed?” But the video showed a woman, DizzyDollie7, trying to contact Autism Speaks but getting sent to voicemail. In the video, DizzyDollie7 did not state when she tried to contact Autism Speaks and might have been trying to call them outside of their operating hours, which would have explained why she kept on getting sent to voicemail. There were also other problems like the voicemail being too short to record anything substantial and there was a glitch which caused the audio to freak out which could have been due to either the hotline or her phone. But what did any of this have to do with my question?

In her channel I found the second part of the video.

In this video, she manages to get in touch with someone who she says was very helpful. This still had nothing to do with my question so I found the third part of this video.

In this follow up video she talks about Autism Speaks sending her spam. She also says that they were supposed to call her back but there was no evidence of that in the previous video. Maybe it was in the email that she received but she didn’t show that so I don’t know. As for the spam, usually there is a link in the email to unsubscribe. Was the link missing or did she not know?

And I still did not know why @artfulretro had showed me the first video.

“Are you saying that to show you that they have changed, they need to design a sensory friendly hotline, hire more hotline operators and have option to opt out of email promotions?” I asked @artfulretro.

“They don’t support autistic adults,” @artfulretro replied. “Have you watched videos of Autistic people on youtube in regards to this topic?” And three people found comfort in her question to me.

Searching for “what can autism speaks do to show they have changed?” on Youtube produces zero relevant results. Perhaps she meant the topic of contacting Autism Speaks? In which case, yes I have. And by the sacred art of Googlefu, I found her first statement to be incorrect as well.

“The second part of the video you linked to me is them helping her with her query,” I replied. “Their resource guide has lots of links to resources for adults 22+. What do you think they need to do more in order to support autistic adults?”

@artfulretro remained silent for a day. But something else happened. @MissyGospelAF walked right up to the both of us and said, “They could listen to people with autism. Stop researching ways to eradicate it. Have autistic people on their board/as ambassadors. Stop advocating CBT & other abusive “therapy”. Stop wanting to cure it or “find solutions” (just another way to say cure, but claim they’ve changed).”

Again I surfed the interdimensional network to find that Autism Speaks has done most of what she said they had to do.

https://www.autismspeaks.org/record, ” I said to her. “But it sounds like you are already aware of that page and you don’t believe them. So what exactly do they need to do to convince you that they have changed? As for CBT, what would you replace it with?”

“What would I replace cbt with?” she asked me rhetorically. “I wouldn’t. Its abuse, plain and simple. I’d try empathy, compassion and understanding. Same way you’d treat anyone else. As the whole, flawless as is, wonderful person that they are. Not like something that needs to be fixed or treated.”

But she was not done. She continued, “To convince me they’ve changed? They’d probably have to not be autism speaks. Plenty of deserving others that could use support and have been decent all along. Plenty that don’t have such an awful history.” @artfulretro reiterated her point.

A great serpent materialised out of thin air, its scales the colour of the rainbow. Its multicoloured forked tongue tasted the air and it turned to look at @autismspeaks. It coiled, ready to strike, a predator hunting its prey.

“They can be doing all the things you wanted them to do in your previous tweet, they can be actually helping autistic people, but you will still tell people not to support them?” I cried out. The serpent was a manifestation of the hatred that @artfulretro and @MissyGospelAF had for @autismspeaks. If only I could get them to realise that their hatred was blinding them to the good that @autismspeaks are doing now…

I don’t know if @MissyGospelAF is autistic or not but @artfulretro bore the #actuallyautistic hashtag. And so, if @autismspeaks is helping autistics now, then @artfulretro is hurting herself every time she attacks @autismspeaks.

One person liked what I said. Due to the strange laws that govern the Twitterverse, I will never know who it is. I go into an infinite spiral of loading whenever I try to divine their handle. As for @artfulretro and @MissyGospelAF, only time will tell if my words had any effect on them.

More strange facts to consider from ASAN’s flyer

Besides the strange math, let us consider the other claims laid out in this flyer.

Very little money donated to Autism Speaks goes towards helping autistic people and families.

Only 4% of Autism Speaks’s budget goes towards the “Family Service” grants that are the organization’s means of funding services.

On the surface the sentiment is correct. Very little of the budget (5.34%, not the 4% stated) goes towards grants in Autism Speaks’s Awareness, Family Services, Advocacy program. It seems that their definition of “helping autistic people and families” only includes money that is directly going to other organisations or people.

Let’s go with that for the moment and take a look at ASAN’s 2016 form 990. They gave $39,090 in grants while having a total budget of $738,688 that year. Going by their own definition, only 5.29% of their budget went towards “helping autistic people and families”. This amount is smaller than Autism Speaks’s 5.34%. Talk about pot calling the kettle black!

Call me autistic but I take the phrase “helping autistic people and families” very literally. First of all, with any grant program there needs to be people who review grant applications and people who audit the organisations whose applications are approved, just to make sure that the grant money is used to actually help autistic people and families. These people would need IT equipment to do their job. Some of these people might need to travel to other cities in order to do their work and I wouldn’t expect them to walk there. I wouldn’t expect them to sleep on the streets. And I would expect them to be paid a decent salary. All these expenses that wouldn’t have been filed under grants are “helping autistic people and families” too.

According to Autism Speaks’s 2016 form 990, they also:

LAUNCHED A THREE-YEAR INITIATIVE CALLED ADVICE: THE AUTISM & DISABILITY VISUAL INTEGRATION COMPANY EXPERIENCE. IT CONNECTS NATIONAL COMPANIES TO LOCAL DISABILITY RESOURCES, WHICH IN TURN CONNECT THOSE FIRMS TO QUALIFIED JOB CANDIDATES ON THE SPECTRUM.


And also:

ON THE FEDERAL LEVEL, AUTISM SPEAKS WORKED CLOSELY WITH GRASSROOTS ADVOCATES AND CHAMPIONS IN CONGRESS TO INCLUDE PROVISIONS IN THE LANDMARK 21ST CENTURY CURES ACT THAT WOULD POTENTIALLY ACCELERATE BIOMEDICAL INNOVATIONS FOR PEOPLE WITH AUTISM AND IMPROVE PATIENT INPUT IN THE DRUG APPROVAL PROCESS.

The expenses and salaries of these advocates, isn’t it “helping autistic people and families”?

And what about research expenses? In 2016, Autism Speaks funded research into Central Audio Processing Disorder and Oxytocin as a treatment option among other things. Isn’t this “helping autistic people and families” as well?

If you take things as literally as me then you will see that Autism Speaks spent $34,917,073 out of $46,739,673 “helping autistic people and families”, which was 74.7% of their cash budget in 2016.

Now, if you do the same with ASAN’s 2016 form 990, they spent $656,071 out of $738,688 on program expenses, some 88.8% of their budget. This might look good at first glance but if you take a closer look, a total of $135,235 was paid to the two directors in 2016 but the reported compensation of directors reported under management and general expenses was only $10,157. The trend continues in other years. In 2015, the director was paid $85,050 while compensation to directors under management expenses was only $3,540. In 2014, $80,000 was paid to the director while compensation to directors under management expenses was only $8,359.

According to Linkedin, ASAN has 21 employees while Autism Speaks has 569. As a smaller and leaner organisation, it is definitely possible that ASAN doesn’t need their director/s to spend as much time on management compared to a huge organisation like Autism Speaks. But I don’t know what the job responsibilities of an executive director are in ASAN. I can only calculate the worst case scenario of all compensation to the executive director/s being misreported under program expenses and present a range of values. With that in mind: In 2016, ASAN spent between 70.5% – 88.8% of their budget on program expenses. In the worst case scenario this is lower than Autism Speaks. In the best case scenario, this is impressive but understandable given the lower management overhead of a smaller organisation.

Which brings us to the next point:

its rates of executive pay are the highest in the autism world: some salaries exceed $430,000 a year.

On the surface this is literally true. Angela Geiger, the president of Autism Speaks was paid $439,025 in 2016. But this fails to take into account that Autism Speaks is also the largest autism charity in the world and that CEO pay goes hand in hand with the size of the charity. According to Charity Navigator’s CEO study:

As you can see from the graph above, Autism Speaks’s CEO pay is par for the course.

The second point the flyer makes is that:

Autism Speaks talks about us without us.

However the next line is:

Autism Speaks has only 2 autistic people out of a total of 26 individuals on its Board of Directors.

Call me autistic again but doesn’t “without” literally mean none or lacking? 2 is not none. 2 out of 26 is 1:13 which, compared to CDC’s 1:59, is 4.5 times more neurodiverse than the general population. How much neurodiversity does it take for it to be enough? 1:5? 1:2? 1:1? And when it is 1:1, isn’t that not neurodiverse anymore? Neurodiversity is the diversity of human brains and minds – the infinite variation in neurocognitive functioning within our species. To me, that sounds like it includes neurotypical people as well.

The final point the flyer makes is that:

Autism Speaks’ fundraising strategies promote fear, stigma and prejudice against autistic people.

Call me autistic, the third time’s the charm, but if they had said that Autism Speaks promoted fear, stigma and prejudice, they would have had a point. There are some old PSAs that Autism Speaks have put out that could have been described this way. However, this flyer was published in March 2018 and here is what Autism Speaks was publishing for Autism Awareness Month 2018.

Exactly how are these videos promoting fear, stigma and prejudice against autistic people?

The flyer also faults Autism Speaks for spending too much on fundraising. It is important to understand that fundraising expenses aren’t necessarily a bad thing. In 2016, Autism Speaks spent $9,981,115 to raise $47,544,741, which means that they spent about $0.21 to raise $1.00. If they had spent less on fundraising, they probably would have had less to spend on their program expenses.

In 2016, ASAN spent $15,036 to raise $374,845, which is a fundraising efficiency of $0.04. That’s impressive! If they had spent more on fundraising, who knows how much more money they could have had to spend on their program expenses? But if their fundraising strategy consists of publishing this kind of crap so that they can undermine the efforts of another charity organisation, shame on them!

The evidence against ABA

We know that autistic boys and girls are different. But there has been very little research done on whether autistic boys and girls should be treated differently or not. The 2014 report on evidence-based practices by The National Professional Development Center on Autism Spectrum Disorder makes no mention of sex.

Take for example Discrete Trial Training (DTT), aka Lovaas Technique by Wikipedia. In the report by the NPDC, they used 13 single case studies to provide empirical support that it is effective. There were a total of 40 autistic participants in these studies.

According to their criteria for what constitutes an evidence-based practice, there should be at least 5 hiqh-quality single case studies by three different investigators or research groups with at least 20 participants across all the studies. So it seems that DTT qualifies as an evidence-based practice.

However, of the 40 participants, there were only 6–8 girls. When sex was not specified, I assigned one based on the name given. One of the studies didn’t specify the sex or names of its participants and there were 2 autistic participants in that study. This means that based on their own criteria, DTT is an evidence-based practice for autistic boys but there is insufficient evidence that it is effective for autistic girls.

Reinforcement, with 43 single case studies, had at least 74 boy and 23 girl participants. There was a study that I did not have access to and another study where sex wasn’t specified and there were no names given. While reinforcement barely squeaks by their criteria when it comes to girls, it’s hard to imagine practices supported by less single case studies having enough evidence to support their effectiveness for girls.

Practices with group studies fare no better. Take Structured Play Groups for example. It had 2 group and 2 single case studies supporting it. I did not have access to one of the single case studies but the other three studies had 68 boys and 11 girls. Their criteria of 2 group studies to qualify as an evidence-based practice might be enough to determine if it is effective for boys but not for girls.

Even if a practice had a lot of group studies to support it, it doesn’t necessarily mean that there is enough evidence for girls either. Technology-Aided Instruction and Intervention has 9 group studies supporting it. Out of these 9, I did not have access to 1 study and 3 of them did not specify the sex of the participants. The remaining 5 had 101 boys and 18 girls participating.

But the problem with group studies is that the results are also presented as a group. One of the group studies had 7 boys and 1 girl. Two others had ratios of 44:5 and 22:2. With studies like these it is possible for the practice to not be effective for all the girls and yet still be effective for the group in general. It is also impossible to determine from studies that do not break down the results by sex whether or not the practice is effective for boys AND girls.

Gender is not the only problem though. Some of these studies are based on the DSM-III classification of autism, which was much more severe. Only one of the group studies I looked at separated their participants into low and high-functioning. Again, just like gender, there is no reason to believe that a practice that works on low functioning autistics would work on high functioning ones.

Link to data that I gathered: https://docs.google.com/spreadsheets/d/1bLwUMcajoeThH6ITTQgQ4nLD9zJQa4GgPVHyfQ_8aFc/edit?usp=sharing

Something strange about ASAN’s flyer about Autism Speaks

31/3/2019 Update: After dissecting ASAN’s 2019 flyer here, I’ve finally figured out what they are doing to get these numbers. I’ve edited this post to remove the speculation.

ASAN’s 2018 Flyer (https://autisticadvocacy.org/wp-content/uploads/2018/03/AutismSpeaksFlyer_color_2018.pdf)

Consider the facts, they say. So I did. I went straight to the source and found something strange…

Autism Speaks Form 990 for 2016 (https://www.autismspeaks.org/sites/default/files/2018-08/2016-form-990.pdf)

Total expenses for current year = 46,739,673

Science = 11,729,054 / 46,739,673 = 25.09%. Correct.

Fundraising = 9,981,115 / 46,739,673 = 21.35%. Correct.

Family Services Grants = 2,497,935 / 46,739,673 = 5.34%. Wait what? This isn’t 4%.

Awareness, Family Services, Advocacy (labelled as “Awareness” & Lobbying by ASAN) = (23,188,019–2,497,935) / 46,739,673 = 20,690,084 / 46,739,673 = 44.27%. Hmm… This isn’t right either. It’s not 46%.

It seems that they took the figures reported as Family Service grants in Schedule I Part II and combined them with the non-doctoral-fellowship grants in Schedule I Part III. This works out to $1,881,045.

1,881,045 / 46,739,673 = 4.02%.

(23,188,019 – 1,881,045) / 46,739,673 = 21,306,974 / 46,739,673 = 45.59%.

However, doing it like this is wrong as only grants that are more than $5,000 need to be reported in this section.

ASAN’s 2017 Flyer (https://autisticadvocacy.org/wp-content/uploads/2017/04/AutismSpeaksFlyer_color_2017.pdf)
Autism Speaks Form 990 for 2015 (https://www.autismspeaks.org/sites/default/files/2018-09/2015-form-990_2.pdf)

Total expenses for current year = 60,617,406

Science = 19,564,193 / 60,617,406 = 32.27%. Correct.

Fundraising = 12,806,970 / 60,617,406 = 21.13%. Wait what? Why is it 24% on the flyer?

Family Services Grants = 2,524,195 / 60,617,406 = 4.16%.

Awareness, Family Services, Advocacy (labelled as “Awareness” & Lobbying by ASAN) = (25,621,093–2,524,195) / 60,617,406 = 23,096,898 / 60,617,406 = 38.10%.

However, doing the same thing as before, we get 2,239,239 / 60,617,406 = 3.69%.

(25,621,093–2,239,239) / 60,617,406 = 23,381,854 / 60,617,406 = 38.57%.

As for how Fundraising got to be 24%, only ASAN knows.

Now, let me illustrate how strange it is to used non-scientific grants reported in Schedule I as a measure. Here are figures from ASAN’s 2016 990 form.

30,000 / 738,688 = 4.06%.

4.02 / 4.06 = 99%. Is ASAN really taking Autism Speaks (AS) to task for only doing 99% of what they do?

Now for ASAN’s 2015 figures.


ASAN didn’t file a Schedule I in their 2015 990 form. So, 0 / 694,043 = 0%.

Compare this to AS’ 3.69%.

3.69 / 0 = This measure is so stupid that even your calculator will tell you that you cannot divide by zero.