A hidden disability? - Automatic identification of autistic children based on appearance reaches 94% accuracy. Spectrum Needs assessed in a small trial. Bullying in ASD. TCF20 and GABAa receptors. Special educational needs – not so special any more.

 

Today’s post is a summary of a small part of the recent autism research. I am constantly amazed how much autism related research is churned out every day. To anyone who says more autism research is needed, just take a look at how much there already is !!  

 

Facial recognition of Autism?

Those working every day with special needs children have long known that you can pretty quickly spot a child with autism, without any lengthy diagnostic procedure.

Some advocates like to see autism as a hidden disability and believe you cannot “look autistic.” They had better not read this post.

I did write about facial recognition of single gene autisms and rare diseases where a commercialized product (Face2Gene) can now identify 200 conditions with 91% accuracy. This is from a single photo of the face. 

Now Chinese researchers have produce software that can predict autism in pre-schoolers with 94% accuracy based on automated analysis of a video.

Risk assessment and automatic identification of autistic children based on appearance

The diagnosis of Autism Spectrum Disorder (ASD) is mainly based on some diagnostic scales and evaluations by professional doctors, which may have limitations such as subjectivity, time, and cost. This research introduces a novel assessment and auto-identification approach for autistic children based on the appearance of children, which is a relatively objective, fast, and cost-effective approach. Initially, a custom social interaction scenario was developed, followed by a facial data set (ACFD) that contained 187 children, including 92 ASD and 95 children typically developing (TD). Using computer vision techniques, some appearance features of children including facial appearing time, eye concentration analysis, response time to name calls, and emotional expression ability were extracted. Subsequently, these features were combined and machine learning methods were used for the classification of children. Notably, the Bayes classifier achieved a remarkable accuracy of 94.1%. The experimental results show that the extracted visual appearance features can reflect the typical symptoms of children, and the automatic recognition method can provide an auxiliary diagnosis or data support for doctors.

The ASD group were all pre-school children, aged between 20 and 60 months, with an average age of 33.4 months for males and 31.5 months for females.

Like it or not, it seems that autistic toddlers do look different and so it is not a hidden disability. Nobody should be waiting years for a diagnosis.

Bullying

Most autism diagnosed today is mild, level 1 autism. Some of this group really do struggle and can genuinely benefit from pharmacologic therapies.

Bullying is one very common issue that is faced and does not need drug therapy, it needs a different kind of intervention.

A preliminary analysis of teaching children with autism spectrum disorder self-protection skills for bullying situations

Children diagnosed with autism spectrum disorder are at high risk of being bullied, but research on teaching children with autism self-protection skills for bullying situations is scant. We taught five children self-protection skills for two types of bullying (threats and unkind remarks) and consecutive bullying occurrences. We first evaluated behavioral skills training and a textual prompt to teach children to report threats of physical or material harm, provide a disapproving statement after a first unkind remark, and occupy themselves with an activity away from a bully after a second unkind remark. Additional tactics were necessary to aid in the discrimination of bullying situations for two children. There were increases in the self-protection skills with all children. Results further support that an active-learning approach is efficacious in teaching responses to bullying in simulated situations. Considerations for teaching these skills while maintaining trust and rapport with children and caregivers are discussed.

Having a sibling in the same school can be an effective defence against bullying. It might be an older brother, as was the case for Monty, but a younger sister can also be very effective. One episode, of many, I witnessed at school was a young Swedish girl intervening on behalf of her older Aspie-like brother. It really shocked the older boys and certainty impressed me.

I think most bullying affects those with level 1 autism. Those with severe autism would tend to have a 1:1 assistant and if he/she is doing their job there should not be the possibility bullying. I am told that out in the real world kids with level 3 autism do get bullied, which means the system has failed.

From the school’s perspective there is also the opposite issue of the pupil with autism/ADHD attacking other pupils or staff. This does happen and if the child is a large fully-grown male can lead to very serious injury. It is not just those with level 3 autism who can do this.

I think the best strategy to protect against bullying is to ensure your child is in a caring environment at school and is well integrated. This may be easier said than done, but it is possible for many people. Then the other pupils will look out for the one with special needs. This assumes you do not overdo it with who gets to be "special".

Special needs are not so special any more, as was highlighted recently in the UK. For the most privileged group of pupils, those going to private fee-paying schools, 41% are getting special treatment in their exams due to their various special needs. Even in the regular state schools, which for sure have a higher percentage of kids with actual special needs, 26% of pupils get extra time in exams.

Nearly one in three pupils in England given extra time in exams, says regulator

Nearly a third of pupils in England were given 25% extra time to complete their GCSEs and A-level exams following a surge in special exam access arrangements being granted, data from Ofqual has shown.

The figure is higher again among exam candidates in private schools where more than two in five received 25% extra time in the last academic year, according to England’s exams regulator.

The total number of approved special access arrangements for GCSE, AS and A-level exams rose by 12.3% in the 2023/24 school year compared to the year before, the data has revealed.

·         Independent centres 41.8%

·         Sixth form and FE colleges 35%

·         Non-selective state schools 26.5%

It comes as education leaders have suggested more pupils are seeking support after the pandemic due to a rise in young people with special educational needs and disabilities (Send) and mental health issues.

Requests for 25% extra time in exams was the most common approved access arrangement for pupils with learning difficulties or disabilities, followed by computer readers, scribes and speech recognition.

 

Folate supplementation in mothers prevent pesticides causing neurodevelopmental disorders in offspring

There is a lot of research about folate (vitamin B9), birth defects and autism. From the early 1990s women were encouraged to take folate supplements during pregnancy to avoid neural tube defects and other congenital abnormalities.

Some individuals have mutations in the MTHFR gene that impair their ability to convert folic acid into its active form, L-methylfolate. For such individuals, taking methylated folate supplements will be necessary.

More recently we have learned that some people with adequate folate intake can lack folate inside their brain. They have antibodies that block the transmission of folate across the blood brain barrier.

We saw how one clinician is prescribing high dose calcium folinate to couples wishing to reduce the risk of autism in their future offspring, if they test positive themselves for folate receptor auto-antibodies.

As we already know exposure to pesticides and some other unnatural chemicals during pregnancy can lead to neurodevelopmental disorders (NDDs) that include autism.

The paper below is interesting because it looks as how to minimize the potential damage caused by exposure to pyrethroid pesticides, one of the most common classes of pesticides in the US.

Folate prevents the autism-related phenotype caused by developmental pyrethroid exposure in prairie voles 

Neurodevelopmental disorders (NDDs) have dramatically increased in prevalence to an alarming one in six children, and yet both causes and preventions remain elusive. Recent human epidemiology and animal studies have implicated developmental exposure to pyrethroid pesticides, one of the most common classes of pesticides in the US, as an environmental risk factor for autism and NDDs. Our previous research has shown that low-dose chronic developmental pyrethroid exposure (DPE) changes folate metabolites in the adult mouse brain. We hypothesize that DPE acts directly on molecular targets in the folate metabolism pathway, and that high-dose maternal folate supplementation can prevent or reduce the biobehavioral effects of DPE. We exposed pregnant prairie vole dams to vehicle or deltamethrin (3 mg/kg every 3 days) with or without folate supplementation (5 mg/kg methylfolate every 3 days). The resulting DPE offspring showed broad deficits in five behavioral domains relevant to NDDs; increased plasma folate concentrations; and increased neural expression of SHMT1, a cellular folate cycle enzyme. Maternal folate supplementation prevented most of the behavioral phenotype (except for repetitive behaviors) and caused potentially compensatory changes in neural expression of FOLR1 and MTHFR, two other folate-related proteins. We conclude that DPE causes NDD-relevant behavioral deficits; DPE directly alters aspects of folate metabolism; and preventative interventions targeting folate metabolism are effective in reducing, but not eliminating, the behavioral effects of DPE.

 

A round-up of therapies to treat mouse autism

Treating human autism is not yet mainstream, but treating autism in mice has been going on for decades. Of course the idea is to use mouse models with a view to later treating humans.

The paper below is about mice, but it is actually a very good summary of the current status of treatment options more broadly.

It even covers the use of HDAC inhibitors to use epigenetics as a treatment tool. Click on the link to read the full text for free. 

The Use of Nutraceutical and Pharmacological Strategies in Murine Models of Autism Spectrum Disorder 

Autism spectrum disorder (ASD) is a common neurodevelopmental condition mainly characterized by both a scarce aptitude for social interactions or communication and engagement in repetitive behaviors. These primary symptoms can manifest with variable severity and are often paired with a heterogeneous plethora of secondary complications, among which include anxiety, ADHD (attention deficit hyperactivity disorder), cognitive impairment, sleep disorders, sensory alterations, and gastrointestinal issues. So far, no treatment for the core symptoms of ASD has yielded satisfactory results in a clinical setting. Consequently, medical and psychological support for ASD patients has focused on improving quality of life and treating secondary complications. Despite no single cause being identified for the onset and development of ASD, many genetic mutations and risk factors, such as maternal age, fetal exposure to certain drugs, or infections have been linked to the disorder. In preclinical contexts, these correlations have acted as a valuable basis for the development of various murine models that have successfully mimicked ASD-like symptoms and complications. This review aims to summarize the findings of the extensive literature regarding the pharmacological and nutraceutical interventions that have been tested in the main animal models for ASD, and their effects on core symptoms and the anatomical, physiological, or molecular markers of the disorder.

The body of research here summarized suggests that many therapeutic strategies have yielded positive results for ASD core symptoms and ASD-linked cellular, anatomical, and metabolic alterations at the preclinical level. These results ultimately confirm clinical and in vitro evidence regarding the main pathways involved in ASD pathogenesis and hint at the potential for the combination of different types of treatment. The studies reviewed here showed that a treatment’s success or failure in these models usually depends on administration timing. The best results are commonly achieved when protective treatment is given in the first weeks after birth or prenatally. Unfortunately, this is not easily translatable into clinical practice as ASD diagnosis, at the moment, postdates this time window. Moreover, it is notable that most of the treatments employed in these studies did not achieve significant improvements in all the behavioral tests or definitive success in clinical trials. Despite the exact causes for the disparity between promising preclinical results and modest or negative clinical outcomes remaining unknown, a few hypotheses can be formulated. The results of many tests commonly employed to measure sociability and repetitive behaviors in mice can be altered by other symptoms known to be observed in these murine models, such as altered motor coordination, cognitive impairment, and anxiety, which may lead scientists to overestimate the effect of certain treatments on social behavior. Moreover, poor translatability may also be ascribed to the heterogeneity in symptoms and genetic backgrounds found in ASD human patients which, conversely, is far more limited in these mice strains. Ultimately, other possible confounding factors such as interactions with concurrent medications, socio-economic elements, patient lifestyle, or concomitant diseases are significantly more frequent and variable in the human population. Poor translatability may be potentially alleviated by precision medicine approaches in clinical practice and by preclinical testing of single treatments in a variety of ASD murine models. Ultimately, the present literature shows that, despite the limited clinical translational success, murine models can be a valuable tool for testing a variety of treatments in ASD research.

 

Figure 2. Schematic representation of key elements of the mTOR pathway and of therapeutic interventions considered in murine models for ASD. Abbreviations: PIP2: phosphatidylinositol 4,5-bisphosphate PIP3: phosphatidylinositol 3,4,5-bisphosphate PI3K: phosphatidylinositol 3-kinase; PTEN: phosphatase and tensin homolog; Akt: protein kinase B; TSC1: tuberous sclerosis 1; TSC2: tuberous sclerosis 2; AMPK: AMP-activated protein kinase; mTOR: mammalian target of rapamycin; mTORC1: mTOR complex 1; mTORC2: mTOR complex 2; S6K: Ribosomal protein S6 kinase beta-1; eIF4E: eukaryotic Initiation Factor 4E; ULK complex: Unc-51-like kinase 1 complex; PKCa: protein kinase C alpha; P: phosphate group

You can see all the amino acids that have been trialed to modify mTOR (taurine, lysine, histidine and threonine) plus metformin and the potent rapamycin.

Also mentioned is the WHEN in what I call the what, when and where in autism treatment. This is the idea of treatment windows, when a specific therapy can potentially be beneficial.

This very concept was discussed in a recent paper on Rett syndrome.

Protein Loss Triggers Molecular Changes Linked to Rett Syndrome 

Key Facts

·         Early Gene Changes: Loss of MeCP2 leads to immediate gene expression dysregulation, affecting hundreds of genes.

·         Neuronal Impact: Dysregulated genes are linked to neuronal function, causing downstream circuit-level deficits.

·         Therapeutic Window: The study reveals a time frame between molecular changes and neurological symptoms, enabling early intervention opportunities.

Another transcription factor (TCF) that causes autism

There is a lot in this blog about TCF4 (transcription factor 4). Loss of this gene leads to Pitt Hopkins syndrome. Disruption of the gene is associated with schizophrenia and intellectual disability.

Mutations in TCF20 lead to a kind of autism plus intellectual disability called TCF20-Related Neurodevelopmental Disorder. Like Pitt Hopkins, this is a rare disorder, but milder misexpression of the gene is likely much more common. In the recent paper below we see which are the downstream effector genes.

Our old friends the sub-units of GABAa receptors are there. In this case it is GABRA1 and GABRA5 that are reduced.

Both GABRA1 and GABRA5 play essential but distinct roles in regulating neuronal inhibition. GABRA1 primarily contributes to synaptic inhibition and is critical in seizure and anxiety regulation, while GABRA5 is involved in tonic inhibition and cognitive processes.

Malfunctions in GABRA1 and GABRA5 can lead to autism, anxiety, schizophrenia, intellectual disability, epilepsy etc

Regulation of Dendrite and Dendritic Spine Formation by TCF20

Mutations in the Transcription Factor 20 (TCF20) have been identified in patients with autism spectrum disorders (ASDs), intellectual disabilities (IDs), and other neurological issues. Recently, a new syndrome called TCF20-associated neurodevelopmental disorders (TAND) has been described, with specific clinical features. While TCF20's role in the neurogenesis of mouse embryos has been reported, little is known about its molecular function in neurons. In this study, we demonstrate that TCF20 is expressed in all analyzed brain regions in mice, and its expression increases during brain development but decreases in muscle tissue. Our findings suggest that TCF20 plays a central role in dendritic arborization and dendritic spine formation processes. RNA sequencing analysis revealed a downregulation of pre- and postsynaptic pathways in TCF20 knockdown neurons. We also found decreased levels of GABRA1, BDNF, PSD-95, and c-Fos in total homogenates and in synaptosomal preparations of knockdown TCF20 rat cortical cultures. Furthermore, synaptosomal preparations of knockdown TCF20 rat cortical cultures showed significant downregulation of GluN2B and GABRA5, while GluA2 was significantly upregulated. Overall, our data suggest that TCF20 plays an essential role in neuronal development and function by modulating the expression of proteins involved in dendrite and synapse formation and function.

Based on these results, we analyzed the expression of neuronal proteins in TCF20-deficient neurons and found decreased levels of GABRA1, BDNF, PSD-95, and c-Fos in total homogenates (Figure 5) and in synaptosomal preparations (Figure 5) of shTCF20 rat cortical cultures. Additionally, GluN2B and GABRA5 were significantly downregulated, and GluA2 was significantly upregulated in synaptosomal preparations of shTCF20 rat cortical cultures (Figure 5).

On the subject of GABA type A receptor, we have a very recent paper from Poland that delves into this subject in great detail. 

Molecular mechanisms of the GABA type A receptor function

The GABA type A receptor (GABA_AR) belongs to the family of pentameric ligand-gated ion channels and plays a key role in inhibition in adult mammalian brains. Dysfunction of this macromolecule may lead to epilepsy, anxiety disorders, autism, depression, and schizophrenia.

And finally …

Dr Frye has published a study that assessed the effect of his friend Dr Boles’ mitochondrial cocktail.

I did meet Dr Boles a while back at a conference in London. He came with his wife and a stock of NeuroNeeds products for sale, including SpectrumNeeds which was the subject of today’s paper. He was telling me all about the great food just across the border in Mexico and how he learnt Spanish.

A Mitochondrial Supplement Improves Function and Mitochondrial Activity in Autism: A double-blind placebo-controlled cross-over trial

Autism spectrum disorder (ASD) is associated with mitochondrial dysfunction but studies demonstrating the efficacy of treatments are scarce. We sought to determine whether a mitochondrial-targeted dietary supplement designed for children with ASD improved mitochondrial function and ASD symptomatology using a double-blind placebo-controlled cross-over design. Sixteen children [Mean Age 9y 4m; 88% male] with non-syndromic ASD and mitochondrial enzyme abnormalities, as measured by MitoSwab, received weight-adjusted SpectrumNeeds and QNeeds  and placebos matched on taste, texture and appearance during two separate 12-week blocks. Which product received first was randomized. The treatment significantly normalized citrate synthase and complex IV activity as measured by the MitoSwab. Mitochondrial respiration of peripheral blood mononuclear cell respiration, as measured by the Seahorse XFe96  with the mitochondrial oxidative stress test, became more resilient to oxidative stress after the treatment, particularly in children with poor neurodevelopment. The mitochondrial supplement demonstrated significant improvement in standardized parent-rated scales in neurodevelopment, social withdrawal, hyperactivity and caregiver strain with large effect sizes (Cohen’s d’ = 0.77-1.25), while changes measured by the clinical and psychometric instruments were not significantly different. Adverse effects were minimal. This small study on children with ASD and mitochondrial abnormalities demonstrates that a simple, well-tolerated mitochondrial-targeted dietary supplement can improve mitochondrial physiology, ASD symptoms and caregiver wellbeing. Further larger controlled studies need to verify and extend these findings. These findings are significant as children with ASD have few other effective treatments.

Conclusion

Plus ça change, plus c'est la même chose.

The more things change, the more they stay the same.

There isn’t much new that we don’t already know. This is probably good news.

I think for Dr Boles and our Spanish speaking readers you would say "Cuanto más cambian las cosas, más siguen igual." Correct me if I am wrong.

Educating children with level 3 Autism

 

Some people do not like South Park, but it is a good example of genuine inclusion

The number of children with autism and intellectual disability continues to rise and this is putting a strain on government resources in many parts of the world. Increasing budgets can never match the increased perception of needs.

In spite of the vast amounts of money being spent very little attention is given to evaluating what gives the best results.

In the US it has long been put forward that the earlier the intervention starts the better the results will be and often it is stated that 40 hours a week of one-to-one therapy is needed.  This view is generally limited to the US.    

ABA therapy became a big business in the US and many providers are now owned by private equity investors.

I did point out that in the book the Politics of Autism, the author recounts her discussions with the founding father of ABA, Ivar Lovaas, that revealed he had rigged his clinical studies by excluding those children who did not respond to his 40 hours a week therapy from the final results. He just dropped them before the end of the trial. This would totally invalidate his conclusions.

There is a recent study on this very subject.

Rethinking the Gold Standard for Autism Treatment

Research shows some autistic children may get more treatment hours than needed.

The JAMA Pediatrics study looked at the relationship between the amount of intervention provided (hours per day, duration, and cumulative intensity) and the outcomes for young autistic children. Researchers analyzed data from 144 studies involving more than 9,000 children, making it one of the most comprehensive analyses of its kind.

Contrary to what many have long believed, the study found no significant association between the amount of intervention and improved developmental outcomes. As the authors write, “health professionals recommending interventions should be advised that there is little robust evidence supporting the provision of intensive intervention.”

Determining Associations Between Intervention Amount and Outcomes for Young Autistic Children A Meta-Analysis

A total of 144 studies including 9038 children (mean [SD] age, 49.3 [17.2] months; mean [SD] percent males, 82.6% [12.7%]) were included in this analysis. None of the meta-regression models evidenced a significant, positive association between any index of intervention amount and intervention effect size when considered within intervention type.

Conclusions and Relevance  Findings of this meta-analysis do not support the assertion that intervention effects increase with increasing amounts of intervention. Health professionals recommending interventions should be advised that there is little robust evidence supporting the provision of intensive intervention.

Some parents in the US get to the bizarre situation where their child can receive 40 hours of ABA for free, but if they say they want only 20 hours because they have other activities for the rest of the week, this is refused.  It is the full 40 hours or none.   

School segregation

Segregation is a word with negative connotations, but it is used when it comes to the merits of inclusive education versus special schools.

There are many ways in which schools are segregated, including

By sex

It is still very common to have separate boys' schools and girls' schools in many countries

By religion

Religious schools are common in both public and private sectors

By ethnicity

This was widely practiced in the United States and South Africa. The legacy of these policies is still evident today.

By ability

Selecting pupils by academic level is very common.

By disability

Segregation of those with learning disabilities into special schools or special classes within a mainstream school is widespread.

By socioeconomic status

Segregation by the ability to pay is common all over the world. In parts of the world there is no schooling for those whose family cannot afford it.

Homeschooling

In parts of the world homeschooling is legal and thriving. The US has by far the largest contingent, with 6% of children home-schooled.  In Germany it is illegal.

What is the best type of school for level 3 autism?

There is no “best” choice.

From the parents' perspective, some are desperate for their child to attend a special(ist) school and some are desperate not to attend such a school.

Some parents choose to home school.

Some parents look for some kind of hybrid solution.

Most parents just take what is given to them.

Inclusion vs segregation

The key issue here is whether the child is “includable”. It is fashionable in Western countries to be anti-segregation and pro inclusion.

Some children are not includable and some school environments are hostile rather than welcoming.  Even some children with level 1 autism struggle to cope in mainstream school.

Monty was lucky and completed all his schooling in a mainstream school with very small class sizes, about 12 pupils. He had his own teaching assistant throughout. Two of his former assistants later became class teachers at his school. We paid for the school and the assistants.

Had Monty attended a school with 30 children in the class with 3 other special needs kids, each with their own teaching assistant, the result would not have been so good.

As you can see it is a question of “inclusion in what” versus “segregation in what”.

What is the purpose of “school”

If you talk to parents of older children you will discover that over the years their view of schooling changes. It is an illusion, one grandfather told me. For many schooling is just daycare for the pupil and respite care for the parents.

Some parents do not want their child to be just taught daily living skills, they want the academic curriculum.

Some schools teach non-verbal children an alternative method of communication, whereas other do not bother.

It is not surprising that the result is often nobody is satisfied.

Peter’s idea about schooling for level 3 autism

I would require all children with level 3 autism to be taught at primary/elementary school a means of communication. Remarkably this is not done.

Proactive parents have been doing this for decades at home, but what if your parents are not proactive?

I read the other day that a mother commented that her non-verbal 7 year old daughter would greatly benefit from an augmentative communication device, but that the council/municipality did not want to provide one. In previous decades these were expensive devices, but nowadays these are just apps that you install on an iPad, or android device. Some of these apps are even free !!

Clearly, I would ensure all pupils with level 3 autism were screened and treated for any type of treatable intellectual disability, the most common one being elevated chloride inside neurons, which was the case for Monty.

I recently was contacted by a parent who, after trying to help his son for 7 years, has finally had success by increasing his dose of leucovorin (calcium folinate). Now his son responds to verbal instructions like "wash your hands".

Some of these children, once under medical treatment, will be able to follow much of the core academic curriculum and be genuinely included in mainstream classes. That was the outcome for Monty, now aged 21.

Children who remain with a lower IQ should not be in classes that teach academic concepts far above their level of understanding. This is pointless and will just lead to frustration.

One non-verbal child I know, who cannot read or write is “taught” a second language at school. How about teaching him a first language?

Children should be taught in groups of similar ability/functioning level, rather than grouping them by age. I thought this would be just common sense, but not in the world of education.

If the material has not been mastered there is no point moving forward, just repeat it. After 15 years at school there should have been measurable progress.

Beware of prompt-dependence and assistant-dependence. Skills learned at school need to be such that the child can apply them independently and can generalize them to new situations. Some wealthy schools provide very high levels of support and this risks that the child will become an adult dependent on a similar level of support. This is an example of “too much of a good thing”.

 

The services “cliff-edge”

Some people with autism, and their families, receive very considerable support for two decades and become dependent on it. At some point in early adulthood these supports may get abruptly withdrawn.

In other parts of the world, there was only ever very minimal support and the family became more self-reliant and so do not experience such a cliff-edge. The family and the young adult learnt to cope.

Level 1 autism / Asperger’s

This post is about level 3 autism, but I am always surprised how many people with level 1 autism write to me so here are some thoughts on them.

You would think that all people with level 1 autism should be able to thrive in mainstream education these days. There is so much in the media, or social media, about accommodating differences and promoting the “able disabled” who are featured everywhere, so how come kids at school are still bullying/tormenting their classmates who are 1% different. Times have not really changed as much as we might have thought.

Most kids with level 3 autism love going to school.  Monty adored it.

Many kids with level 1 autism clearly hate it.

During my time helping to run my children’s school one of the things teachers told me was that kids are actually very supportive of those who are clearly disabled but will delight in picking on kids who are a tiny bit different.

The net result is that many children with level 1 autism thoroughly enjoyed their on-line education during the pandemic away from all that awkwardness at school.

Many parents whose child goes to a special school for autism or Down syndrome are completely unaware that there are also some special schools for level 1 autism. It greatly surprised me.

 

Conclusion

The idea of trying to educate children with level 3 autism is relatively new. In the recent past they were just put aside in institutions and forgotten about.  Today much is possible, but a lot comes down to who the parents are and where they happen to live.

The Education for All Handicapped Children Act (EAHCA) of 1975 (later renamed the Individuals with Disabilities Education Act, or IDEA, in 1990) was the major turning point in the US. This ultimately opened the door to a flood of ABA, paid for by private health insurance, but only in the US.

My doctor mother once commented to me that we had shown that such children can be taught and can genuinely learn. This was a combination of personalized medicine and personalized learning.

Good things don’t just happen, you have to make them happen.

The outcome in level 3 autism is hugely variable and that is rather sad.

Bravo Monty! Academic results in Autism

 

Some risks are worth taking, however long the journey

Academic results are part of most people’s life, whether you love them or loathe them.

Most children diagnosed today with autism will do just fine at school, but this was not always the case.  Those born 20 or 30 years ago and diagnosed in early childhood with autism are usually in a much less fortunate position.

Today’s post is about level 3 autism and what the Lancet Commission want to call Profound autism. The new idea is that if by age of 8, a child with autism still has severe intellectual disability or minimal language then he/she can be best described as having Profound Autism.

In other literature the term SDA (Strictly Defined Autism) was proposed.  It means what was called autism back in the 1990s and earlier.

You can have severe autism with any level of IQ, which I think many people may not be aware of, or even accept.

 

Monty and his Academic Results

The “bravo” for Monty comes from Dr Ben-Ari, the scientific brain behind the idea to use Bumetanide to treat autism.

I wrote to tell him that after almost a decade of bumetanide, Monty has passed his externally graded high school exams.  In the English system they are called General Certificates of Secondary Education (GCSE), Monty took the international version called IGCSE. You normally take them at the age of 16, but we held Monty back 2 years at the age of 9 so he took them at 18 years old.

These exams are not graded by the school, they are sent away to be marked by someone who just sees your candidate number.  Of course it is still possible to fiddle the results, but this is not common.

Up to the age of 9, it was pretty clear that Monty would not even be attempting these exams.  It was assumed he would not be going to the high school.  His school has no resources for those with special needs.

Fast forward a decade and Monty made his way into high school and in 2022 sat his IGCSE exams.  His results included a B in science, a C in maths a C in English.  As I told Dr Ben Ari, Monty’s results will not take him to the Ivy League or a Grande École, over where he is in France.  For someone with Strictly Defined Autism (SDA) it is pretty remarkable.  

In the US you might well "graduate" high school, but the quotation marks hide the real picture. Graduation from special education just means you aged out of it.  Life is better without the quotation marks.

Bumetanide may have failed its phase 3 clinical trial, but for some people with severe autism it is a game changer.

 

Game Changer

My new book is also called Game Changer and it is currently being edited.

It will be available via Amazon as either an eBook or as a paperback.

The book is the length of a novel, about 90,000 words or 300 pages.  It is not intended for everyone to read from cover to cover.  It has plenty of non-scientific content and there is plenty in it a typical parent would find useful.

 

Facebook links

Facebook links to EpiphanyASD are no longer blocked.

Just use epiphanyasd.com, not the old epiphanyasd.blogspot.com.

 

Trouble leaving comments

Some people are having trouble leaving comments on the blog.  This seems to be caused by 3^rd party cookies in your browser.  One solution reported to me is to switch to incognito mode.

I could never use an iPad to do anything clever on the blog, just read it.  

Game Changer or Fine Tuning? It depends on severity of Autism

 

There are so many possible autism interventions discussed in this blog, it clearly is not always easy to know their relative merit.

There are so many people now diagnosed with autism it is no longer such a meaningful term.  The most extreme autism I think I will have to start calling really severe autism.  A scale of 1 to 100 would be much more helpful than the current levels 1, 2 or 3. I suppose Elon Musk and Greta are level 1.

One reader did recent describe the effects of bumetanide in his child as being game changing.  I think it is an excellent description to use.  For our reader Roger, Leucovorin was a game changer.

Another reader wrote to me to give an update about his three year old

“After 3 months of bumetanide treatment I've seen improvement on his cognition, like, he is now able to finish an apple and take the end to the trash by himself or enter in his room, turn the lights on, take some toy, turn lights off and close the door or eat his lunch by himself. He is smarter now.”

This reader is well on his way to finding the additional elements for his son’s personalized polytherapy and the way he is going about it is likely to yield optimal results. Most of what you need is tucked away in this blog somewhere.  It is a case of who dares wins.

Using my scale of 1 to 100, with Elon and Greta in low single digits and many people referred to at the blog of the US National Council of Severe Autism mainly at 80-100, we can put interventions into a bit more perspective.

It is still far from perfect because most people with really severe autism reach a plateau in development at a very young age.  This matters because as a three year old they do not look/behave so differently to a typical child, but by the time they reach 18 years old, the difference is gigantic.

If you could delay the onset of this developmental plateau for a decade the result would be transformative.  Based on the longitudinal studies to adulthood, it looks like about 80% of severe autism reaches a plateau at the level of a 2-3 year old.  The other 20% continue to learn, but at a slower rate than typical children. 

In the case of the autism which is <10, like Greta and Elon, very small issues can still become very troubling.  There was inevitably bullying at school from mild to severe, there likely was (and still is) anxiety, perhaps an eating disorder, perhaps some self harming or even suicidal thoughts.

If you fine tune the brain a little to reduce anxiety and improve social/emotional responsiveness, you can trim someone’s score from a 15 to a 9 and make them feel much better.  Job done.

For someone with an IQ of 50 (i.e. severe intellectual disability), non-verbal, non-literate, who is sometimes aggressive and exhibits autistic behaviors, you are going to need much more than fine tuning, you need a game changer.  Then you can go on and fine tune things to give further incremental improvement.

One doctor reader did suggest to me that, in effect, five moderately effective interventions might equal one game changer.

In the case of autism that I deal with, the most important step was raising cognitive function, not treating what people consider to be autism.  I think that this applies to almost all people with a score 50 to 100.  Even if it was never actually diagnosed, the barrier to progress is low cognitive function and a severely reduced ability to learn and acquire new skills.  This has to be fixed and for many people the tools already exist.

 

Improving cognitive function

Game Changer

·      Bumetanide  (also Azosemide, KBr and, possibly, Betaine with the same effect of lowering chloride inside neurons)

Fine tuning

·      Atorvastatin, reducing cognitive inhibition

·      Micro-dose Clonazepam, shift E/I imbalance

·      Low-dose Roflumilast, raising IQ

 

Reducing autistic behaviors

Fine tuning

·      NAC

·      Sulforaphane

·      Verapamil

·      Oxytocin

·      BHB

·      Pentoxifylline

·      Agmatine

·      Clemastine

·      DMF

·      Leucovorin (Calcium Folinate)

 

Interventions with a slow course of action

Some interventions, for example pro-myelinating therapies (like clemastine and Tyler’s N-acetylglucosamine), or pro-autophagy therapies, may take a long time to show effect. I think you may need to first see very tangible results from other therapies, which are much easier to assess.

As Roger will want to point out, in the case of Cerebral Folate Deficiency Leucovorin was the game changer.

In the case of other metabolic autisms, a single therapy may also be the game changer, like the Greek boy for whom high dose biotin resolved his previously severe autism.

In the case of Fragile-X, there seem to be potential game changers galore.  The latest is plugging the leaky membrane in mitochondria that is allowing ATP to leak out, using a research drug dexpramipexole, or potentially the related and already approved variant Mirapex ER (pramipexole).  Mirapex is used to treat the symptoms of Parkinson Disease and Restless Legs Syndrome. 

If our occasional reader and bio-statistician Knut Wittkowski is correct, Mefenamic Acid (the NSAID Ponstan) could be a real game changer, if taken around 2-3 years of age.  He suggests this will block the progression to severe non-verbal autism. Knut has been upsetting YouTube with some of his interviews about Covid-19 and his deal with Q-Biomed to develop Mefenamic Acid fell through. You can buy Ponstan very cheaply, outside of the US, even as a pediatric syrup.

Hopefully, Dr Naviaux's Suramin will be a game changer for some.  More of that in the coming post on leaky ATP.

Conclusion

I am told where we live that Monty’s autism is “fixed”, or by one autism Grandad we know, “he’s 80% fixed”.

If you started life with (really) severe autism, even 80% fixed means you are still pretty autistic, much more so than Elon and Greta, but far less so than the now adult “children” over at the National Council for Severe Autism, who have really severe autism and often had a very early plateau in development.

Monty has finished his year-end exams.  Overall, the grades of his NT classmates are pretty terrible, maybe due to Covid disruptions.  I told Monty’s assistant that if he can come somewhere in the middle, without her doing the tests for him or having extra time, that is a great result, regardless of the grade itself.  In all his subjects he comes in the middle. In the English educational system, Monty is now a C student, maybe even with the odd B or D; so not something to boast about.  What really is amazing  is this person could not figure out  9 – 2 = 7,  at the age of 9 years old, prior to starting bumetanide and his Polypill therapy.  Now he is nearly 18 years old.

If you find that your young child is a genuine bumetanide responder, but later struggle to source it, take a close look at what untreated severe autism looks like by adulthood.  Then you may choose to redouble your efforts to get hold of your game changer. Some readers are getting it from Egypt, Pakistan, Nigeria, China, Austria and many from Mexico and Spain.  In Brazil you can buy it only in a compounding pharmacy. The lucky ones get it at their local pharmacy, which is what should be possible for everyone and one day that might even happen.

There are countless fine-tuning therapies that may be potentially effective in a particular person.  They are certainly worth having; you just have to look at what is available and cost effective.

There will soon be a post about leaky ATP in Fragile X and autism.

Two readers have highlighted the research suggesting that Betaine might have a similar effect to Bumetanide.  It does not block the NKCC1 transporter, but it may reduce the mRNA that produces them, so the net effect may potentially be similar.  At much lower doses, Betaine is a common autism supplement.  This will be covered in the next post.

 

Core vs extended Maths? An unexpected dilemma. And yet they say “Autism is untreatable and you should not try to treat it”. Plus Lego

 

This time the “Professor” wears the Dunce’s cap

I had a surprise last month, talking to my son’s 1:1 assistant, this time about maths (or math in US English).

Normally I am trying to simplify school academics, and so if something really is not important, like argumentative writing, I am all for skipping over it.  The idea is that Monty, aged 17 with autism, should focus on useful learning that he has a chance of mastering.

Monty’s international school follows an English curriculum and in that model you have a choice in some subjects of studying the core or the extended version. So a typical child who wants to become a doctor, or an engineer, will have to follow the extended version of all their subjects, but someone who is going to shift boxes in a warehouse might opt for the core/simplified versions. Most people lie somewhere in between.

People with severe autism would not normally follow any of these academic curricula, because it is all way above their heads.  Their school is about life skills and providing day-care, while the parents are out at work, or having some respite. Realistically, “graduation” is often just a photo opportunity - things could and should be better.

There is very little published about literacy and numeracy in severe autism.

I thought an ambitious target for Monty would be to try and sit exams, aged 18, in five subjects, but at the easy level where possible, the so-called “core” version.  These exams are normally taken at the age of 16, which is the minimum school leaving age in the UK.

The maths teacher has been thinking about which of her students should be aiming at core or extended.  She thinks five pupils should be aiming for extended and the others should settle for core.  Monty is one of the group of five.

The assistant was almost apologetic, because she did not want to change my plans for Monty. He is now "too good" for core maths.

I do know Monty’s mathematical abilities very well, because I teach him maths at the weekend.  He is no maths savant, but he works extremely hard and now has a good understanding of what they learn at school. I am just amazed at the other kids, with no disability, who do not keep up with him. Prior to pharmacological autism treatment, starting at the age of nine, Monty could not subtract single digit numbers, like 9 – 2 = 7.

Even more recently Monty’s school assistant proudly announced his results in the half year maths test. He got 68%, making him 3^rd out of the 15 people in class.  68% certainly does not make you an “A student”, but given he was a “basket case” at maths not many years ago, it is truly remarkable. The teacher even told the whole class his score, which you might think would lead to resentment, but the others are actually very supportive. They have seen his progress over the years. They are currently involved in helping him to reliably tell the time. For some people solving algebra is easier than telling the time – who would have thought that?

The other day I skimmed through an article about some Professor who was quoted as saying “Autism is untreatable and you should not try to treat it”. What a fool - more of a dunce than a Professor. 

Literacy and Numeracy Rates in Autism

People rarely talk about literacy or numeracy in autism. I think it is another issue that people do not want to discuss. We would rather hear about people with savant skills, or characters from those TV shows like the Good Doctor, with trivial autism.

It is clear that many people with severe autism currently cannot read or write, so I suppose they are also innumerate.

You can be non-verbal but literate and numerate; there are specific teaching methods.

I was recently asked to present at an autism conference in Russia. I did click on the organisation’s website and I was pleased to see on the first page its message to Russian parents that you can teach people with autism to read and write and indeed that non-verbal kids belong in school. I agree with them, but it may seem like a Herculean task at times.

My last conference presentation was very simple and not controversial, at the request of the US organizer.  Russians like science and they have asked for a long presentation, so they will get the real deal. A big job for the person who has to translate and then dub it into Russian!

 

 Any human brain can be taught to read, write, count

 

One to one teaching, as above in Russia, is the only way to teach those with severe autism.

Reading and writing do matter. Look at the literacy rates by country and guess where you find countries like Afghanistan, Ethiopia, Sudan and Nigeria?

In Afghanistan the male literacy rate is 55% and for females it is 30%.

Even India has 25% illiterate and they tell us it is the world’s largest democracy. In India literacy ranges from about 66% in Andhra Pradesh in the South East to over 95% in Kerala in the South West. In China illiteracy is just 3% and it shows.

In the US 4% are non-literate and the average American adult reads at the 7^th- to 8^th-grade level, i.e. like a 13 year old child; plenty of room for improvement.  The problem is the large group at the bottom who drag down the overall results. This is why countries like Finland do so well in skill assessments; they do not have a forgotten underclass.

  

Why bother with Mathematics?

It is certainly worthwhile reconsidering what to teach people with severe autism. If you cannot cut your own fingernails, or tie your own shoelaces, why do you need to know any maths?

Maths is all about following instructions/rules. If you can follow instructions, you can do maths. Daily living skills are also all about following instructions; before emptying the dishwasher, check the dishes are actually clean! Monty has learnt that lesson.

What do you do when the toothpaste has run out? Find some more and if that does not work, ask for help.

Learning to follow instructions is extremely important to those with learning difficulties; just like practising motor skills helps them overcome their initial challenges with fine and gross motor skills.  In the end, the problems just fade away.

Lego is a great way to combine following instructions with improving fine motor skills. It is a perfect therapy for autism; at the very beginning you can use large bricks to get a young child to replicate simple colour patterns (so-called “block imitation”) by stacking bricks. You can use Lego to develop team skills; one person locates the next bricks, while the other assembles them.

We have a lot of Lego at home, but until recently it was mainly the simple models of planes and helicopters that were of interest to Monty. People would give complicated (expensive) models for birthday presents, when actually what you want are the cheaper, simple ones.

We have now progressed to the point where Monty has completed a model that was intended for people older than himself. All the Lego sets have an age recommendation on them. Yes, Lego has some very complicated Star Wars models meant for those 18 and over.  A Christmas present from big brother, it did have a ridiculous number of pieces (several hundred) and some mistakes were made. 

Monty actually calls it “doing the instructions”, rather than making Lego.

The key seems to be to leave him entirely alone and let him make the occasional mistake.  If a later part does not fit, he asks for help and you then intervene, find the earlier mistake and correct it.  If you hover behind him to prevent any mistake being made, then you are not achieving much.

 

Conclusion

You definitely can treat severe autism, meaning raise IQ and/or improve quality of life.  The evidence is overwhelming and is sitting there in the peer-reviewed science.

It looks like you can avoid/prevent some autism by taking certain steps prior to conception and during pregnancy. This is quite clever.

After birth, can you “cure” severe autism? I think this will only be possible in rare cases, for example correcting an in-born error of metabolism at an extremely young age. One example in this blog was the young Greek boy with biotinidase deficiency, that responds to high dose biotin. Our reader Roger is a rare example of an adult whose central folate deficiency was only treated in adulthood.

You can minimize many troubling features of autism at any age; this applies to Aspies and those with more severe autism.

Learning maths develops much broader skills than might be initially apparent.

Lego is a great activity and a fun therapy.  You can of course re-use it, particularly the most basic sets, which you can use over and over.

Autism and the Police – challenging behaviors leading to restraint

 

Today’s post is about an issue that seems to cause a problem in some countries far more than others. While some people with mild autism (Asperger’s) may feel anxiety when dealing with the police, the big problem occurs when the police are called in to restrain someone with severe autism and particularly someone who is also non-verbal with MR/ID.  Most people with untreated severe autism actually have MR/ID, even if it was never diagnosed.

It would never occur to me to call the police to restrain my own son, but in North America this is a regular occurrence.  It sometimes does not end well, often it was the parents who called the police, when it is not the parents it is likely to be the school. The research shows that most often the police in the US do successfully resolve the incident.

I did ask my son’s assistant what she knows about the police dealing with aggressive autistic people. She knows lots of people with autism and parents. She initially did not understand my question, because where we live nobody would think to call the police to deal with their autistic son/daughter. You would just deal with it yourself, as best as you could.  Even if you did call the police, there is nowhere for them to take an aggressive person with autism.

Schools have a difficult job dealing with people with autism who exhibit challenging behaviors.  They have a range of options that do include restraint and indeed seclusion.  Monty, now aged 17 with autism, used to have a male 1:1 assistant for a couple of years.  The assistant was training to be a speech therapist and also worked at a special school. Because he was a male in his mid-twenties and athletic, he was the first option when a child in the school got aggressive and needed restraining. In some schools this restraint involves several staff and it is not without risks to all involved.

 

A Dreaded Part Of Teachers' Jobs: Restraining And Secluding Students

Earlier this year, an NPR investigation with WAMU and Oregon Public Broadcasting found deep problems in how school districts report restraint and seclusion. Following that investigation, NPR reached out to educators about their experiences with these practices. 

The view of some unhappy UK parents:-

Disabled children ‘constantly’ physically restrained and left with bruises and trauma, parents say

Small children are sometimes placed in a supposedly safe room and left alone to calm down. 

Our son was always in school with his own 1:1 assistant and never required any intervention from the school’s staff, even when he had extremely “challenging” behaviors as an 8 year old. At that time he only went to school in the morning and his assistant at that time, though female, was very tall, young and sporty and so well able to take care of physical behaviors, so keeping the peace in the classroom.

 

Challenging Behaviors as Children get Bigger

Young children with autism do have meltdowns for numerous reasons, but these are not usually difficult to deal with.  As children get bigger and stronger, challenging behaviors can become so severe that parents struggle to cope.

When Monty had his 9 months of raging, he was only eight years old; I could easily pick him up and hold him upside down, which was his “reset button”. At his current age of 17 years old, I could still do this …  but I might drop him if he wriggled.

Hopefully, parents figure out and treat challenging behaviors in childhood and so are not left with an aggressive autistic adult to deal with.  It is these adult-sized people with challenging behavior who are at risk if they encounter the police. Given the difficulty special schools have dealing with aggressive autistic kids; it is hardly surprising that many police officers lack the skills to safely restrain an aggressive adult-sized person with autism. In my opinion an untrained police officer is entirely the wrong people to be involved.

One piece of advice I was given shortly after Monty was diagnosed with autism, was from my doctor mother, “make sure he does not get aggressive, as he gets older”.  This is very wise advice, perhaps rather easier said than done, but was based on her seeing what actually happens to adults with a psychiatric diagnosis.

Here is a study from Canada exploring families living with a child with autism and challenging behaviors.

 

Home Sweet Home? Families’ Experiences With Aggression in Children With Autism Spectrum Disorders

Although not inherent to the diagnosis, many individuals with autism spectrum disorders (ASD) display aggressive behavior. This study examined the experiences of families living with individuals with ASD who also demonstrate aggressive behaviors. Using a qualitative approach, semi structured interviews were conducted with parents of nine males with autism and aggression. Eight families’ homes also were observed. Through constant-comparison analysis of interview data, triangulated with home observations, three central processes were identified: deleterious impact on daily routines and well-being of family members, limited supports and services, and financial strain. Emergent themes included isolation, exhaustion, safety concerns, home expenses, respite needs, and limited professional supports and alternative housing. Examination of families’ experiences living with someone with ASD who is aggressive, and the impact of aggression on the supports and services that families receive, constitutes an important step in tailoring resources to best meet families’ needs.

 

The families who participated in this study demonstrated great resiliency in the face of adverse living situations. Many families of individuals with ASD become more optimistic and accepting of their children’s diagnoses over time, relying less on formal supports and services. Unfortunately, this optimism was not expressed by the families who participated in this study because aggression presented significant and pervasive challenges to their families, for which adequate knowledge, supports, and services were not in place. Many of the families in this study received ASD specific medical, home- and community-based services in a geographic location known to have a relatively high level of service for individuals with ASD; however, parents perceived that none of these services were equipped to deal with aggression

 

Canada is one of the better countries when it comes to dealing with severe autism.

In the United Kingdom, when it comes to autism and the police, it appears that neither party is satisfied.

Experiences of Autism Spectrum Disorder and Policing in England and Wales: Surveying Police and the Autism Community 

An online survey gathered the experiences and views of 394 police officers (from England and Wales) regarding autism spectrum disorder (ASD). Just 42 % of officers were satisfied with how they had worked with individuals with ASD and reasons for this varied. Although officers acknowledged the need for adjustments, organisational/time constraints were cited as barriers. Whilst 37 % of officers had received training on ASD, a need for training tailored to policing roles (e.g., frontline officers, detectives) was identified. Police responses are discussed with respect to the experiences of the ASD community (31 adults with ASD, 49 parents), who were largely dissatisfied with their experience of the police and echoed the need for police training on ASD.

 

I came across a very detailed study from the US, with very many links to other papers, for those interested in this topic. In the US it seems that most parents are satisfied with encounters with the police.  Given the bad impression of the American police given by much of the media, this is very noteworthy and encouraging. 

Correlates of Police Involvement Among Adolescents and Adults with Autism Spectrum Disorder

This study aimed to describe police interactions, satisfaction with police engagement, as well as examine correlates of police involvement among 284 adolescents and adults with autism spectrum disorder (ASD) followed over a 12- to 18-month period. Approximately 16% of individuals were reported to have some form of police involvement during the study period. Aggressive behaviors were the primary concern necessitating police involvement. Individuals with police involvement were more likely to be older, have a history of aggression, live outside the family home, and have parents with higher rates of caregiver strain and financial difficulty at baseline. Most parents reported being satisfied to very satisfied with their children's police encounters. Areas for future research are discussed in relation to prevention planning.

 

Similar to past studies concerning emergency service use among individuals with ASD (e.g., emergency department and psychiatric in-patient services; Kalb et al. 2012; Lunsky et al. 2015; Mandell 2008), aggression was the primary presenting concern resulting in police contact in the current study. A significant proportion of police resources are expended on resolving mental health crises in the community (de Tribolet-Hardy et al. 2015; Short et al. 2014). The appropriateness of such police involvement has been questioned due to the time, cost, and lack of adequate mental health training provided to police (Clifford 2010; Fry et al. 2002). Research concerning more effective solutions to responding to psychiatric crises, such as the use of crisis intervention teams (Franz and Borum 2011; Compton et al. 2008), is promising and should be extended to include individuals with ASD. A history of aggression differentiated individuals who did and who did not interact with police in the observation period. Aggressive behaviors commonly occur in ASD (Kanne and Mazurek 2011; Matson and Rivet 2008; Mazurek et  al. 2013), with rates reported to occur in up to 68% of affected individuals at some point in their lives (Lecavalier 2006). These behaviors can result in negative physical, emotional, and financial consequences for family members (Hartley et  al. 2012; Hodgetts et  al. 2013). Despite a high need and the recognized existence of effective empirically based interventions, there is often a lack of professional knowledge and community-based resources to assist individuals with ASD and their families deal with aggressive behaviors (Hodgetts et  al. 2013; White et  al. 2012). In the current study, an individual’s history of aggressive behavior, caregiver strain and police contact were associated with each other, further highlighting the need for appropriate community-based family supports. Police contact in the observation period was more likely among older individuals with ASD, those living outside of the family home, and individuals without structured day activities at baseline. Age, family involvement, service use and/or community involvement have similarly been shown to predict involvement with police and the greater criminal justice system among typically developing youth (Greenberg and Lippold 2013; Ryan and Yang 2005; Williams et al. 2007). There is a recognized decline in service availability in the adult service sector for individuals with ASD; a phenomenon referred to as a “service cliff” in past ASD research (Shattuck et al. 2011; Turcotte et al. 2016). Findings from the current study emphasize the importance of developing supports and service models to meet the needs of this population. Autism spectrum disorder symptom severity and ID status were not associated with police contact in this convenience sample. Similarly, Rava et al. (2017) found no association between individuals’ conversation ability and police contact. The diversity of individuals’ presentations emphasizes the broad training police may need to properly understand and interact with all individuals with ASD. To this effect, ASD support and advocacy organizations have initiated various tools to assist individuals with ASD disclose their diagnosis and individualized communication needs to law enforcement officers (e.g., information cards; Debbaudt 2006). The efficacy of these tools from the perspectives of the individual with ASD and law enforcement officials is an area for future research. Most police interactions did not result in criminal charges being brought against the individual with ASD. This replicates Rava et al.’s (2017) increased rate of police contact compared to convictions. In the current study, police contact resulted in a variety of outcomes, including crisis resolution, transportation to the emergency department, and/or physical restraint. Additionally, parents reported that police involvement had a calming effect in nearly half of all incidents and reported, on average, being somewhat satisfied with their children’s interactions with police. This is in contrast with a recent U.K. based study where almost three-quarters of surveyed parents of adults with ASD reported unsatisfactory ratings of their interactions with police officers (Crane et  al. 2016). In addition to being from a different jurisdiction, that study included only retrospective reports from caregivers who had police involvement, whereas our study followed a larger group of families forward, some of whom had police involvement in the observation period.

 

In the study below from Australia, it concludes that more training and awareness is needed by the local police when called in to deal with autistic people being violent at home. Not surprisingly, it is the parents who usually get attacked by the autistic person – so better keep in shape! 

Domestic violence events involving autism: a text mining study of police records in New South Wales, 2005-2016

Highlights

·      Text mining was applied to domestic violence police records in Australia.

·      Domestic violence involving autism most commonly involves parent-child relationships.

·      Autistic domestic violence more commonly involves intellectual disability.

Background

Recent research and high-profile media cases have suggested an association between autism spectrum disorder and violent behaviour. Whilst certain characteristics of autism may make individuals vulnerable to increased involvement with the police, either as a victim or person of interest, evidence regarding this is scant. The present study used a population-based dataset to describe the characteristics of domestic violence events involving autistic and non-autistic adults.

Methods

Text mining and descriptive statistics were applied to police-recorded data for 1,601 domestic violence events involving autism and 414,840 events not involving autism in the state of New South Wales, Australia from January 2005 to December 2016.

Results

The relationship between autistic victims and perpetrators was predominantly familial or carer whereas events not involving autism were predominantly involved intimate partners. Abuse types and injuries sustained were similar for both autistic and non-autistic events. The most common mental conditions present in autistic perpetrators were developmental conditions and intellectual disability, whilst non-autistic perpetrators most commonly reported psychoactive substance use or schizophrenia.

Conclusions

These results highlight the need to further understand the risk factors for strain and violence in relationships between autistic adults and their family members or carers, especially for those with comorbid behavioural developmental conditions. Given the uniqueness of domestic violence involving autism found in this study and the potentially unique nature of the circumstances surrounding these events, appropriate police awareness and training in relation to autism is needed.

Unfortunately, calling for help, whether from the police or a psychiatric hospital can lead to a quick downward spiral of events, from which there may be no return. 

In the US there are residential places at Kennedy Krieger where they try and treat children with extremely challenging behaviour – good luck to them!  The idea is that after a few weeks the child gets sent home. There are very limited places and I wonder who pays for them.

Where we live, there still are some residential mental institutions.  One boy we know of got very aggressive towards his mother and he was sent to live in such a facility, surrounded by adults with schizophrenia and other conditions.  This boy actually likes living there, it is very structured and there are activities, so he is not trying to escape home.

 

France and Belgium

I did meet a French former classmate of mine a few years ago and she told me all about her nephew with severe autism. Life got so bad with his aggression at home that, as a young boy, he was sent to live in an institution in Belgium.

I always remember this because I thought it extremely odd that a large country like France would send its disabled children across the border to live in little Belgium. I also wondered who paid for this.

The family were in no rush for the boy to come home and in fact feared the day when he would age out of the Belgian facility for children.

Across the world mental hospitals for adults have been shut down and they have not really been adequately replaced with alternatives. So there may be nowhere to go.

The French sending kids with autism to Belgium has actually been going on for years, as you can read below.

Disabled French Alone – or Sent to Belgium

For years France has been sending disabled citizens to Belgium. This kind of “forced exile”, denounced by the paper Libération, applies especially to adults. Problems are a bit different for children: certain parents are themselves addressing Belgium because it proposes education methods, especially for autistic children, which still do not exist in France. 

In his latest report, the EU Commissioner for Human Rights reproached the French government for depriving an estimated 20 000 disabled children of school education. 

 

Conclusion

The research suggests that 2 in 3 people with autism will engage in aggressive behaviors at some point in their life. These tend to be learned behaviors, meaning once they develop they are likely to reoccur.  Once the "beast within" has been discovered, it is really a case of controlling it, rather than banishing it forever; it is likely both biological and behavioral.

For children with challenging aggressive behavior, there should be an urgency to resolve the issue as much as possible, otherwise the future will not be bright.  Psychiatric drugs are unlikely to be the answer, they are just a band-aid with troubling side effects.

Calling the police to deal with an aggressive adult-sized person with autism does seem to be asking for even more trouble. In the US, it may work well for some people, some of the time, if they happen to have extremely understanding and well-trained first responders, but I think their luck will eventually run out.

Without aggressive behavior there would be no need for institutionalization, in a strict setting.

The medical literature and parent reports are scattered with many clues and ideas of how to resolve challenging aggressive behavior in autism; you just have to look and the sooner the better. It may well take time to find the optimal solution, but the sooner you start looking, the sooner you will find it.  Verapamil is an effective solution in my case, but yours is very likely to be different.  Nobody keeps a comprehensive list to refer to.

Based on the studies I reviewed, the police in the US are doing a better job dealing with autism than the police in some other countries. This is not the impression you get from media reporting, which makes it seem that the cops will just shoot you, or suffocate you, if you are autistic and aggressive. So a pat on the back is deserved.