Article by leading pro cure autistic posted in The Spectator

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I’m an American man affected by the disability autism. As a child, I went to special education schools for eight years and I do a self-stimulatory behaviour during the day which prevents me from getting much done. I’ve never had a girlfriend. I have bad motor coordination problems which greatly impair my ability to handwrite and do other tasks. I also have social skills problems, and I sometimes say and do inappropriate things that cause offence. I was fired from more than 20 jobs for making excessive mistakes and for behavioural problems before I retired at the age of 51.

Others with autism spectrum disorder have it worse than I do. People on the more severe end sometimes can’t speak. They soil themselves, wreak havoc and break things. I have known them to chew up furniture and self-mutilate. They need lifelong care.

Given this, could any reasonable person think autism is not an affliction? Could any caring person try to prevent sufferers seeking a cure? Common sense dictates the answer should be no. The reality is that identity politics has become so deranged that there is a group of people (both here and in the UK) who seek to prevent autistic people getting help, on the nonsensical grounds that it’s insulting to suggest they need it.

Some proponents of the neurodiversity movement do not believe that autism is a disability at all. Others acknowledge that autism is a disability, but differentiate between the medical model of disability and the social model of disability.

Many parents of autistic persons and some autistic persons themselves (myself included) have expressed a desire for a cure for autism. This causes outrage among neurodiversity proponents.

They insist that the purpose of genetic research in autism is to develop a prenatal test to abort autistic fetuses. The only cure we need, they say, is an end to discrimination, which would solve, or at least greatly mitigate, the challenges and poor outcomes accompanying autism.

Many of those in the neurodiversity gang claim to be autistic and to speak for others on the spectrum. They use what a friend of mine called ‘the royal we’. They state ‘we’ don’t want to be cured — as if we all feel the same way. But in fact they are very different from the majority of autistics. Many on the spectrum can’t speak or use a computer.

In the wider group of autistic people, there’s a 4:1 ratio of autistic males to females, yet the majority of neurodiversity proponents are women. Many of them have no overt disability whatsoever. Some of them are lawyers who have graduated from the best law schools in the United States. Others are college professors. Many of them never went through special education, as I did. A good number of them are married and have children. No wonder they don’t feel they need treatment.

They don’t seem to think they need common courtesy either. In their crusade against treatments and discrimination, these individuals are frequently less than cordial to those who disagree with them. They often equate their opponents to Nazis. Parents of autistic children who search for a cure are accused of not loving their kids. The movement argues that autistics, such as myself, who desire a cure were taught to be self-haters by their parents and society. They protest at fundraising walks conducted by Autism Speaks, (a charity they loathe) and regularly harass its supporters. They have compared Autism Speaks to the Ku Klux Klan.

In the United States a law was passed by Congress to help autistic people and their families. It was called the Combating Autism Act. Neuro-diversity proponents were outraged at the notion of being ‘combated’, so they took to Twitter en masse, and started the hashtag #Don’tCombatMe. Many of them wrote to their Congresspersons and Senators. As a result, the US government changed the name of the law to the less offensive Autism CARES (Autism Collaboration, Accountability, Resources, Education and Support) Act. The US government also created a body called the IACC (Interagency Autism Coordinating Committee), which now advises the federal government on autism policy. It includes members of the general public with an interest in autism. The law requires that two autistic individuals serve on this body, and to date, seven pro-neurodiversity, anti-cure autistics have been appointed. Zero anti-neurodiversity pro-cure autistics have been chosen to serve on this board, although two were nominated but turned down.

Autism Speaks, which had never before responded to neurodiversity proponents, published a response on its website, citing all the good work it has done. Next, it changed its mission statement, no longer using the words ‘cure’ or ‘prevent’. It appointed two autistic individuals to its board of directors who oppose a cure for autism. Despite being autistic, both of these new directors have been able to write books, get married and obtain doctoral degrees.

The obvious problem with the increasing dominance of the neurodiversity movement is that those more severely impacted by autism are often not in a position to lobby.

It concerns me greatly that the neuro-diversity movement now wields such influence. I worry that it will prevent the scientific research that might help me and others more severely afflicted. I hope there will be a backlash against this movement and that people will see sense before it is too late.

I think his point is best summed up in the last two paragraphs.

He seems to be making the point that ND proponents aren't in the best position to advocate for those in the more severe end of the spectrum, not that they aren't autistic.

Girls With Autism Flying Under the Radar proclaims one headline. For many years, it’s been accepted wisdom that there’s an approximately 4:1 ratio of autistic men to autistic women. Recently, self-advocates, scientists, and clinicians have challenged this long-accepted ratio. They claim autism presents differently in girls. As a male on the autism spectrum, I have read several articles on the subject with interest.

A popular explanation for the gender disparities is a phenomenon called camouflaging. Its proponents claim mildly autistic women are better at disguising their symptoms than their male counterparts. They copy the behavior of non-autistic women. Therefore, they’re either less likely to be evaluated by a clinician. One piece of evidence for this hypothesis is the male/female ratio of those more severely afflicted is 2:1, but the ratio is more like 6:1 or greater for more mildly impaired individuals.

Some individuals have claimed a lower male to female ratio is a fact rather than a hypothesis. The proponents of this idea believe if women were adequately assessed and diagnosed, the sex ratio could be 2:1 or lower. Are they correct?

A few published studies claim to support this idea. Dworzynski and colleagues conducted a study comparing boys and girls who had high autistic traits. Some didn’t merit an autism diagnosis while others did. Among this high-trait group, they found more boys received a diagnosis than girls (56% versus 38%). The diagnosed girls had more pronounced behavioral issues than the diagnosed boys, i.e., more hyperactivity, social problems, anxiety, acting out, as well as lower average IQs. The girls who had autistic traits, but were not considered impaired enough to merit a diagnosis, had greater communication difficulties but less social impairments compared to the non-diagnosed traited boys. This suggests the possibility higher level in social abilities among some girls cause them to be missed by a clinician.

In a published report by Sarah Bargiela and colleagues, 14 women who received a late diagnosis of autism spectrum disorder (ASD) were interviewed. These individuals reported they learned to camouflage their autism by mimicking other girls’ behavior, and reading about characters in novels and emulating that behavior. Though they were able to fit in at school, they had problems at home. Some of them reported they were so adept at camouflage and mimicking the behavior of neurotypical people, they were skeptical they had an ASD. However, they had problems with anxiety, depression, and eating disorders. When they consulted professionals, these individuals did not note how these could be related to autism. Some of these women asked professionals if they had an ASD, but these concerns were dismissed, or they were misdiagnosed.

Another study done by Meng-Chaun Lai and colleagues attempted to quantify differences in camouflaging between autistic men and women. They developed a camouflage measurement based on external behaviors evaluated on the Autism Diagnosis Observation Scale, versus internalized behaviors assessed with subjective surveys. They found autistic girls, on average, had significantly better ability to camouflage their autism.

A study done by Allison Ratto and colleagues assessed a group of autistic boys and girls and found the females had comparable scores to the males in the Autism Diagnostic Observation Scale as well as the Autism Diagnostic Inventory. Contrasted with the comparable scores to males on the ADOS and ADI, on The Vineland Adaptive Scale and the Social Responsiveness Scale, two parent-rated measurements, autistic females were found to have lower independent living skills as well as worse communication and adaptive behavior than males. Based on these results, Ratto et al. hypothesized the reason was females effectively camouflaged their autism, as well as a bias against girls being diagnosed.

One of the problems with this line of thinking is similar ratios are reported in attention-deficit/hyperactivity disorder (ADHD), dyslexia, stuttering, and other developmental disabilities, where the individual would be unable to camouflage their condition.

On scrutiny, there are flaws in the works of Dworzynski, Bargelia, Lai, and Ratto. One of the problems with the Dworzynksi study was the instrument used to assess the autistic traits, the CAST (Childhood Autism Spectrum Test, originally Childhood Asperger Spectrum Test) has been found to have limited predictive value, about 50% against clinicians’ consensus diagnosis.

In Bargelia’s paper, the sample of 14 women came from recruitment on the Internet in social media groups frequented by high-functioning autistics or individuals known to the investigators rather than a sample drawn from a clinical group. At least seven of the women were employed. Others were parents with children. A few of them were university students. This would likely not represent a typical sample of even high-functioning autistic women. There was no comparable group of males assessed to see if the phenomena of alleged masking and camouflage were unique only to females. No explanations were offered why autistic males would be less motivated or capable of camouflage or masking behaviors.

In Lai’s study, women’s ability to camouflage was one standard deviation higher than in me, a significant, but not really huge discrepancy. Furthermore, there was considerable overlap between the genders. Some women had low camouflaging abilities, and some men had good camouflaging abilities.

Their data fail to explain the large differences in the gender ratios of more severely autistics as opposed to the more mildly impaired individuals. If anything, Lai’s work argues against camouflage as the reason for the discrepancy in the ratios.

In Ratto’s paper, there is no discussion of why the parents would not have sought a clinical diagnosis for their children when these girls obviously had some sort of problems, and whether or not they were differentially diagnosed as something other than autistic.

Though the average IQ of all the subjects of both sexes was about 101, there was a wide range in the scores (between 71 and 145). Therefore, at least some of the autistics in the study had an intellectual disability or borderline. It’s unclear what percentage of these were males and what percentage were females. It’s possible some of the lower-functioning females contributed to the results. In none of these studies do the authors explain why female autistics would be more adept at masking their disability than males. Is there biologic evidence of a high male-to-female ratio in autism?

Females also have two X chromosomes while males only have one. There are a variety of forms of autism that are X-linked, such as fragile X. The female’s spare copy of the X chromosome may protect her from this effect, but she still might be able to pass it on to her son. This could in part account for the higher ratio of autistic men to autistic women.

However, the number of X-linked cases which usually result in intellectual disability would be too small to completely account for the higher ratio in men. It’s also possible that differences in the way male and female brains are structured may give females some protection against autism. Because of this, females may need to have a higher level of genetic mutations than males to acquire autism.

Elise Robinson of Harvard University provides circumstantial evidence of this in one study. She compared boys and girls in a group of opposite-sexed fraternal twins with autistic traits. She found when comparing boys and girls who were ranked in the top 10th percentile in these traits, the girls were more likely to have an autistic sibling than the boys. These findings suggest a greater amount of genetic loading may be required for girls to become autistic than in boys.

Research on genetic mutations suggests females need a larger hit of mutations to become autistic. Sebastien Jacquemont and colleagues found three times as many deleterious mutations in female autistics than in males. This was also the case when they controlled for cognitive abilities of the sexes, suggesting that this was not because the female autistics were more severely affected. They also found higher levels of these mutations in the mothers of the children than the fathers. This data suggests that females have some sort of protective effect, making them less vulnerable to autism.

A study done by Donna Werling and colleagues compared gene expression in male and female brains. In autistic postmortem tissue versus controls matched for age, they found the genes expressed more commonly in the male brains were also expressed more commonly in autistic versus the non-autistics. They also studied the brains to see if genes associated with autism were differently distributed in male and female brains. They found this not to be the case. However, they found that genes that are indirectly associated with autism are expressed differently in the male brain versus the female brain, suggesting females require a higher genetic load in order to get autism.

The clinician bias and camouflaging hypotheses have led to a push by some activists to create an entirely different definition and diagnostic criteria of autism for women.

If there are helpful supports they can receive, and it can be proved that autism presents differently in women, then they should receive these services.

Studies on camouflaging and other explanations of why female autism rates could be higher than reported are still new. More time is needed to assess this research to see if there’s any empirical evidence to support these claims. To date, there appears to be none. In the meantime, it’s not helpful to claim these theories are established fact.