Showing posts with label SIB. Show all posts
Showing posts with label SIB. Show all posts

Thursday 6 October 2022

Different L-type Calcium Channel Blockers Repurposed for Different Types of Autism


 A Purkinje Neuron, home of P-type calcium channels

Today’s post was prompted by a reader who saw a very positive response from the L-type calcium channel blocker, Amlodipine.

So we return to the subject of calcium channels.

The good news about calcium channel defects is that many are easy to treat.

In most single gene autisms (Rett, Fragile-X, Pitt Hopkins etc) the underlying problem is that a faulty gene does not do its job of producing the expected protein.  This is a problem of too little.

In many ion channel dysfunctions the problem is not too little, it is too much expression. For example, in Timothy Syndrome the mutation in the gene produces too much of the protein, in this case the L-type calcium channel Cav1.2.

Ion channel dysfunctions can be the result of a faulty gene, or just that the on/off switch for that gene is faulty.  Fortunately, the problem is usually that it is stuck “on”.

In people who develop Type-1 diabetes we have seen how the disease process can be halted by blocking Cav1.2 in the pancreas.  This halts the decline in the beta cells that produce insulin.

Once all the beta cells are dead, the person cannot produce insulin and has type-1 diabetes. Treating the person after this point with a Cav1.2 blocker will provide no benefit; the damage has already been done

Something similar happens in Parkinson’s disease, but this time you need to block Cav1.3.  In the early stages of the disease Cav1.3 is over-expressed in a key part of the brain, which triggers a slow process of degeneration. Treating a person with all the visible symptoms of Parkinson’s with a Cav1.3 blocker will provide no benefit; the damage has already been done.


Calcium channel blockers are not very specific

The current drugs used to block calcium channels were mainly developed to treat heart conditions.

When treating neurological disorders like autism we are primarily focused on the brain, what goes on elsewhere can also be very relevant, but in an indirect way.

In the brain the important calcium channels are: -

L type

N type

P type

R type

T type

Plus, Inositol trisphosphate receptor (IP3R) and Ryanodine receptors. IP3R has been covered in previous posts.

Verapamil (a Phenylalkylamine class drug)

Verapamil blocks L type channels and T type channels, plus some potassium ion channels.

When it comes to specific L type channels there are 4, Cav1.1, Cav1.2, Cav1.3, and Cav1.4.

In the brain we have just Cav1.2 and Cav1.3. Verapamil mainly affects Cav1.2.


Amlodipine (a Dihydropyridine class drug)

Amlodipine blocks L type channels and N type channels.

Amlodipine mainly affects Cav1.3.


Nicardipine (a Dihydropyridine class drug)

Nicardipine blocks L type channels and N type channels.

As a Dihydropyridine, it should mainly affect Cav1.3.

In addition, it blocks the sodium ion channel Nav1.8.

The effect on Nav1.8 is why it has been proposed as a therapy for Pitt Hopkins. In this syndrome Nav1.8 is over expressed as a downstream consequence of a mutation in the TCF4 gene.


Effect on P channels

To some extent Verapamil, Amlodipine and Nicardipine all block P channels.

P channels are called P after the Purkinje neurons, where they are located. These Purkinje cells likely define some aspects of autism, because of their absence. Purkinje neurons are among the largest in the brain, with elaborate dendritic arbor.  I imagine this makes them vulnerable.

In the people with severe autism most of the Purkinje cells appear to have died.

Blocking P channels might have protected Purkinje cells from death.


The effect of too much L-type calcium channel signaling on behavior 

You can both turn on self-injury via activating L type calcium channels and extinguish it by blocking the same channels.  It is proven in mice and seems to apply to at least some humans.

Calcium channel activation and self-biting in mice

The L type calcium channel agonist (±)Bay K 8644 has been reported to cause characteristic motor abnormalities in adult mice. The current study shows that administration of this drug can also cause the unusual phenomenon of self-injurious biting, particularly when given to young mice.

The self-biting provoked by (±)Bay K 8644 can be inhibited by pretreating the mice with dihydropyridine L type calcium channel antagonists such as nifedipine, nimodipine, or nitrendipine. However, self-biting is not inhibited by nondihydropyridine antagonists including diltiazem, flunarizine, or verapamil.

(±)Bay K 8644 functions as an L type calcium channel activator that increases calcium fluxes in response to depolarizing stimuli (). In rodents, this drug has been reported to produce characteristic motor abnormalities including impaired ambulation, twisting and stretching movements, transient limb extension, back arching, spasticity, ataxia, or catatonia (). Some studies have anecdotally noted the occurrence of SIB with this drug (), though this phenomenon has received little attention. The current study shows that (±)Bay K 8644 will reliably provoke SB and SIB under certain conditions in mice, providing a tool to study the neurobiology of this unusual behavior.


When I first encountered the above study, I did wonder why Verapamil did not extinguish the self-injury.

It turns out that Bay K 8644 is a modified version of the common drug nifedipine, which is a Cav1.3 blocker.  Verapamil is mainly a Cav1.2 blocker.  Bay K 8644 is like the opposite of nifedipine.

In the trial they have activated Cav1.3 causing excess calcium inside neurons. The only way to block this process is to block Cav1.3. Blocking Cav1.2 with Verapamil could not solve the problem. 

Note that activation of Cav1.3 can cause motor abnormities in mice and this might be seen as ataxia in a human. One particular reader of this blog will see the relevance of this. 

I did write extensively in earlier posts about the large amount of research that links L type calcium channels to neuropsychiatric disorders.

I did mainly focus on Cav1.2 using Verapamil, but the evidence for the role of Cav1.3 is clear as day. 

L-type calcium channels as drug targets in CNS disorders

 L-type calcium channels are present in most electrically excitable cells and are needed for proper brain, muscle, endocrine and sensory function. There is accumulating evidence for their involvement in brain diseases such as Parkinson disease, febrile seizures and neuropsychiatric disorders. Pharmacological inhibition of brain L-type channel isoforms, Cav1.2 and Cav1.3, may therefore be of therapeutic value.


From Gene to Behavior: L-Type Calcium Channel Mechanisms Underlying Neuropsychiatric Symptoms.

The L-type calcium channels (LTCCs) Cav1.2 and Cav1.3, encoded by the CACNA1C and CACNA1D genes, respectively, are important regulators of calcium influx into cells and are critical for normal brain development and plasticity. In humans, CACNA1C has emerged as one of the most widely reproduced and prominent candidate risk genes for a range of neuropsychiatric disorders, including bipolar disorder (BD), schizophrenia (SCZ), major depressive disorder, autism spectrum disorder, and attention deficit hyperactivity disorder.

Here, we provide a review of clinical studies that have evaluated LTCC blockers for BD, SCZ, and drug dependence-associated symptoms, as well as rodent studies that have identified Cav1.2- and Cav1.3-specific molecular and cellular cascades that underlie mood (anxiety, depression), social behavior, cognition, and addiction.


Was I surprised that Amlodipine, that targets Cav1.3 rather than Cav1.2, was very beneficial in someone with severe autism?  Not at all.

I was interested that the effect was more pro-cognitive than anti-anxiety.  Is that the effect on Cav1.3 or is it via that N channel Cav2.2?

N-type calcium channels are important in neurotransmitter release because they are localized at the synaptic terminals. Piracetam, the original cognitive enhancing drug, is also a N type channel blocker.


Statins and L type calcium channels blockers – it matters which one you choose

We previously saw how the statin class of drugs can be beneficial in autism, but it depends which one you chose. For example, in SLOS (Smith-Lemli-Opitz syndrome), where both copies of the gene DHCR7 are mutated, you need to push the gene to work. To increase expression of this gene you need Simvastatin. This is hard for people to understand because SLOS features very low cholesterol and statins are thought of as cholesterol lowering drugs. The body needs the enzyme DHCR7 to make cholesterol and Simvastatin increases DHCR7 expression.

In the case of L type channel blockers, the selection is very important.  The effect will not be the same.

If you have a mutation in Cav1.2, you would expect Verapamil to be a good choice.  If the mutation is in Cav1.3, you would expect Amlodipine to be better.

If you have over expression of T channels (Cav3.1, Cav3.2 or Cav3.3) then you would expect a benefit from Verapamil and none from Amlodipine.

If you have over expression of the N channel (Cav2.2) then you would want Amlodipine

If you have over expression of the sodium channel Nav1.8 then you would want Nicardipine



It is likely that many people with autism, bipolar, ADHD or schizophrenia might benefit from treating their ion channel dysfunctions.  The required drugs are cheap generics that have been in your local pharmacy for a few decades.

Back in 2019 I wrote the post below:

Cheap common drugs may help mental illness

I highlighted a new study, using historic data from Sweden, that looked at the secondary effects of statins, calcium channel blockers and metformin on psychiatric hospitalization.


Association of Hydroxylmethyl Glutaryl Coenzyme A Reductase Inhibitors, L-Type Calcium Channel Antagonists, and Biguanides With Rates of Psychiatric Hospitalization and Self-Harm in Individuals With Serious Mental Illness


Question  Are drugs in common use for physical health problems (hydroxylmethyl glutaryl coenzyme A reductase inhibitors, L-type calcium channel antagonists, and biguanides) associated with reduced rates of psychiatric hospitalization and self-harm in individuals with serious mental illness?

Findings  In this series of within-individual cohort studies of 142 691 patients with bipolar disorder, schizophrenia, or nonaffective psychosis, exposure to any of the study drugs was associated with reduced rates of psychiatric hospitalization compared with unexposed periods. Self-harm was reduced in patients with bipolar disorder and schizophrenia during exposure to all study drugs and in patients with nonaffective psychosis taking L-type calcium channel antagonists. 

We found that periods of HMG-CoA RI (statin) exposure were associated with reduced psychiatric hospitalization in all subgroups of SMI (Serious Mental Illness) and with reduced self-harm in BPD and schizophrenia.

Exposure to LTCC (L type calcium channel) antagonists was associated with reduced rates of psychiatric hospitalization and self-harm.

Periods of metformin (a type 2 diabetes drug) exposure were associated with reduced psychiatric and nonpsychiatric hospitalization across all SMI subgroups.


Use of L type calcium channel blockers reduces self-harm.

How much more evidence is needed?

I took an educated guess several years ago that Verapamil would tame summertime raging in my son.  It was the only calcium channel blocker I tried and it worked. This year we had the emergence of extreme sound sensitivity. My educated guess was that blocking potassium channels with Ponstan (Mefenamic acid) would resolve the problem, and it did.  

Treating ion channel dysfunctions (channelopathies) in autism clearly is not rocket science; it is just waiting to be attempted.

Monday 16 August 2021

Pioglitazone for Autism and Specifically Summertime Raging and Verapamil-responsive Autism?


Adult-sized people with autism can cause property damage and much worse.

I am told that summertime raging is a common problem encountered by neurologists, but it remains poorly understood and usually remains untreated.

The most common worry for parents of toddlers diagnosed with severe autism is their lack of speech.

By the time these children reach adulthood, the biggest worry for parents is often aggression and self-injury. Often it is the mother who faces the worst episodes of aggression, which is a really cruel turn of events.

Aggression is usually not present in young children with autism, in some people it never develops, but in others it later becomes established as a learned behavior and then you are stuck with how to deal with it.

One of my own therapy targets has long been to improve cognitive function; this can indeed be achieved and then you can improve important daily living skills (adaptive function). Some steps that you can take to improve cognition, and indeed speech, have a downside in that they increase anxiety, which may lead to aggression. Calcium Folinate (Leucovorin) does cause aggression in a significant minority of people.  I think that low dose Roflumilast (60mcg) is cognitive enhancing, as proposed by the researchers at 100mcg, but it does seem to increase edginess/anxiety. DMF (Dimethyl fumarate) increases alertness, which is a good thing, but too much alertness will make you anxious.

When dealing with a full sized adult, which is more important, increased cognition/speech or avoiding explosive aggression?

Clearly there is a need for a compromise.

In adults with severe autism, living at home, entirely extinguishing aggressive behavior looks like the number one treatment goal.

For children in mainstream school, following the regular curriculum, cognitive function has to be a top priority.  Fortunately, this is our case, but only after starting Bumetanide therapy in 2012.

It looks like you can potentially have the best of both worlds - increased IQ and adaptive function, but without aggressive behavior. That is my own experience, but it was not simple.

Pioglitazone has been covered quite extensively in this blog and it is again featuring in the research. Pioglitazone is an interesting old drug used to treat people with type 2 diabetes; the phase 2 trial for autism has been completed.  I doubt there will be a phase 3 trial due to the high costs. Pioglitazone is broadly anti-inflammatory; it reduces the pro-inflammatory cytokine IL-6 and increases the anti-inflammatory cytokine IL-10.

We have seen in early posts how important is IL-6 and that it plays a key role in both allergy and even how milk teeth roots “dissolve” and then permanent teeth erupt. This transition to permanent teeth is another common cause of raging in autism, in our case it was mostly wintertime raging. 

IL-6, either directly or indirectly, seems to negatively affect behavior.


PPAR gamma

In earlier posts there was a lot about the various PPARs. These are used in medicine as targets to treat conditions like high cholesterol and type 2 diabetes.

Resveratrol and Pterostilbene are the OTC supplements that some readers are using. Sytrinol is another such supplement, but its cognitive benefit unfortunately just lasts a few days.

Here is a relatively recent paper on the subject, for those seeking the details. 


Nuclear Peroxisome Proliferator-Activated Receptors (PPARs) as Therapeutic Targets of Resveratrol for Autism Spectrum Disorder


Or just look up the old posts in this blog:-

PPARs are rather complicated, but do seem to be very relevant.  For example, the master regulator of mitochondrial biogenesis, something called PGC-1 alpha, is activated by PPAR gamma. If you have mitochondrial dysfunction that included a reduced number of mitochondria, you might want to make more mitochondria. A PPAR gamma agonist might be beneficial.

Dysregulation of PGC-1 alpha is associated with neurodegenerative and metabolic disorders including Parkinson's, Alzheimer's and Huntington's.

Outside this blog, there is some interest in PGC-1 alpha and autism, particularly in connection with oxidative stress and mitochondrial dysfunction.


“In conclusion, we demonstrated mitochondrial oxidative stress may affect a significant subgroup of ASD children and that the SIRT1/PGC-1α signaling pathway may be a promising medical treatment for ASD.”

Source: Role of SIRT1/PGC-1α in mitochondrial oxidative stress in autistic spectrum disorder

It does look like PPARs can be targeted and provide a benefit for at least some types of autism. My choice is Pioglitazone.


Dumber in the Summer

In parallel with summertime raging comes the phenomenon I called “Dumber in the Summer”, where cognitive function regresses.

Monty’s assistant told me recently there is no “Dumber in the Summer” this year, and I opened my medicine cupboard and explained why this is indeed the case.

At least in our case, when you resolve summertime raging, you also protect against cognitive regression. That therapy involves Verapamil, Pioglitazone and allergy therapies, Dymista spray (azelastine + fluticasone) plus Ceterizine and Clemastine. Clemastine also has the pro-myelination effect and stabilizes microglia.


Pioglitazone Side effects

In the stage 2 trials for autism doses of 0.25 mg/kg, 0.5 mg/kg and 0.75 mg/kg were all found to be safe and well tolerated.

As a summertime add-on therapy it appears very well tolerated.

In adults with type 2 diabetes, who will tend to be overweight and not so healthy, there are common side effects.  At one point, it was thought that there was an association between this drug and bladder cancer. Now this is thought not to be the case.

For adults with severe untreated autism, who are aggressive and self-injure, these behaviors very much limit where they can live and what they can do during the day. Life expectancy is also severely reduced. If Pioglitazone can help control these behaviors, some side effects are likely a price worth paying. 



Pioglitazone, by the standards of autism drugs, has plenty of evidence in the literature, regarding both mouse models and humans, to support an n=1 trial.  It addresses neuro-inflammation, one key feature of autism and it has beneficial effects on mitochondria.

Pioglitazone abolishes autistic-like behaviors via the IL-6 pathway

In a small cohort of autistic children, daily treatment with pioglitazone eased some autistic behaviors, such as irritability, lethargy, stereotypy, and hyperactivity, without significant side effects

 pioglitazone treatment inhibits the secretion of proinflammatory factors, such as nitric oxide and IL-6, and enhances the levels of the secretion of anti-inflammatory factors IL-4 and IL-10. Therefore, considering the results of Qiu and Li and our present findings, pioglitazone acted to benefit autistic-like behaviors possibly via the inhibition of IL-6 secretion in astrocytes stimulated by LPS, which inhibited the neuroinflammatory response.


I think for people whose child with autism has a behavioural or cognitive regression in summer, there is good reason to expect a benefit.  They very likely have allergies or other autoimmune conditions.

For people who deal with aggression and self-injury in a person who responds partially, but not 100%, to Verapamil, they may find that Pioglitazone helps to complete their anti-aggression therapy.

Our doctor reader Agnieszka did her best to collect case studies of people with autism responsive to Verapamil, but not enough parents wanted to participate.

Based on the comments section in this blog, it would look like our reader George in Romania has a son whose son’s aggression is reduced by Verapamil.  If some aggression persists in summer, I think there is a very good chance that Pioglitazone will help reduce it.  George did recently share with us the the anti-inflammatory Probiotic Lactobacillus Plantarum 299v, from the previous post and widely used for irritable bowel syndrome (IBS), improved his son's speech.  

Note that the research clearly shows that most autism has an "inflammatory" element, but the exact nature varies (for details read the work of Paul Ashwood at the MIND Institute).  There are very many different anti-inflammatory therapies that are reported to benefit specific people, but there are no unifying therapies that work for all. Some will inevitably make non-responders worse and potentially dramatically so, like L.reuteri ATCC PTA 6475, found in Biogaia Gastrus. Trial and error seems unavoidable if you want to find an effective therapy.

The research proposes Pioglitazone as a year round therapy for idiopathic autism.  In the phase 2 trial almost half of the children were deemed to be responders to the treatment; not a bad result. I think it also has potential as just a summertime add-on therapy. We used it last summer and now again this summer.

People with a diagnosis of mitochondrial disease, who also present with lethargy, might be another target group because of PGC-1 alpha.

Monday 10 May 2021

Self-Injurious Behavior (SIB) in Autism– if all else fails, why not ECT?


I did mention Electroconvulsive Therapy (ECT) in a recent post as a therapy for Self-Injurious Behavior (SIB) in autism and since there has been a review paper published very recently, it is the topic of today’s post.

There was a previous post on this subject:-

Electro Convulsive Therapy (ECT) and Cannabidiol (CBD) in Autism

By coincidence, Mr Electric, Elon Musk, has just revealed that he has Asperger's Syndrome. I don't think he will be fitting ECT to his Tesla vehicles anytime soon.  ECT is likely only going to be used by those at the other extreme end of the autism spectrum, the ones who do not know was money is, let alone cryptocurrencies.

There are many possible ways to treat someone who self-injures or indeed is aggressive towards others. From a psychiatric unit you might get various psychiatric drugs (antipsychotics etc), protective and restraining devices and in some cases Electroconvulsive Therapy (ECT).

Some literature on ECT suggests that it is effective in almost all cases of SIB.

This blog is mainly about novel personalized medicine and in the case of SIB there are multiple choices, which may, or may not be effective in any one case. In my son’s case the SIB was driven by an ion channel dysfunction which is fully treatable with a cheap little yellow pill, Verapamil.


Electroconvulsive Therapy (ECT)

ECT is a psychiatric treatment where seizures in the brain are electrically induced in patients to provide relief from mental disorders.  There are no muscular convulsions.  ECT involves multiple administrations, typically given two or three times per week until the patient is no longer suffering symptoms. ECT is administered under anesthesia with a muscle relaxant.

ECT is often used with informed consent as an intervention for major depressive disorder, mania, and catatonia.

Unfortunately, in autism, maintenance ECT therapy is required.  It is a treatment, not a cure.

The study below refers to catatonia, which you may not be familiar with.

Catatonia is a group of symptoms that usually involve a lack of movement and communication, and also can include agitation, confusion, and restlessness. Until recently, it was thought of as a type of schizophrenia.




Electroconvulsive Therapy (ECT) for Autism Spectrum Disorder Associated with Catatonia and Self-Injury: A Clinical Review 



We reviewed published clinical reports that evaluated treatment effects of electroconvulsive therapy (ECT) with children, adolescents, and adults who had autism spectrum disorder (ASD), catatonia, and self-injury.


Published reports were identified from an internet search and summarized according to seven review criteria: (a) participant description, (b) clinical presentation, (c) previous treatments, (d) course of ECT, (e) treatment outcome, (f) side effects, and (g) evaluation methodology.


ECT was associated with clinical improvement in all participants. Most notable benefits included decreased self-injury, acquisition or recovery of functional life skills, elimination of catatonic symptoms, and return to baseline functioning. Maintenance ECT was typically required to sustain improved clinical status in the months and years following acute ECT.


There appears to be sufficient evidence that supports therapeutic benefits from ECT in persons with ASD, catatonia, and self-injury. However, measurement methods and evaluation design vary greatly among reports, there may be a publication bias towards cases with positive findings, and more rigorous clinical research is necessary particularly concerning optimization of maintenance ECT to maximize benefit and monitor for any adverse response.


The reports and summarized results are presented in Table 1. Among the participants (N=14), 28.5% were female and 71.4% were male ranging in age from 8 to 33 years old. From this sample, 35.7% were children, 28.5% were adolescents, and 35.7% were adults. Beyond the primary diagnoses of ASD and catatonia, the participants had comorbid conditions of intellectual disability, attention-deficit hyperactivity disorder, bipolar disorder, major depressive disorder, Tourette’s disorder, Addison’s disease, and neuroleptic malignant syndrome. The clinical presentation of participants at the time of referral for ECT was uniformly debilitating. Many participants refused to feed themselves, were significantly underweight and malnourished, and required nasogastric or gastrostomy tube feeling. Their general level of adaptive functioning was typically compromised, described as “needing assistance with feeding, getting dressed, brushing his teeth, and combing his hair”, displaying “significant mood instability characterized by irritability, tantrumming, alternating laughing and crying episodes as well as intermittent insomnia and anorexia”, and exhibiting “spontaneous episodes of punching, kicking, and biting, often requiring her to be restrained by several adults”. Self-injury was severe and long-standing, for example, a child, adolescent, and adult who had a “five year history of self-injury” that “included slapping and punching his head as well as banging his head or his knees and shoulders”, performed “hand-to-head, knee-to-head, and hand-to-body self-injury”, and “struck knees against his head, hit his head against a fixed surface or object, punched his face and head with hands, pressed fingers against his eyes, and bit any part of his body”. The seriousness of cases was reflected in participants who required inpatient hospitalization and were no longer able to attend school, live at home, or participate in the community. Use of protective equipment such as hard and soft helmets, padded gloves, arm and body guards, and rigid arm restraints restricting flexion at the elbow was uniform across reports.

Access to ECT in the USA varies greatly among states based on the presence or absence of procedural restrictions, practice regulations, administrative requirements, and stipulations regarding consent. This variability from state-to-state impacts patient care and evaluation of effectiveness of ECT when procedures and protocols are not uniform and administered consistently.

Maintenance ECT in which the number of treatment sessions was gradually decreased during the hospital stay preceding and then following discharge was indicated in nearly all clinical reports. Haq and Ghaziuddin  wrote that “withdrawal of maintenance-ECT in patients with autism and catatonia often precipitates relapse of symptoms, perhaps more rapidly and predictably than in the treatment of mood disorders”. They advised that m-ECT be continued as long as clear evidence shows it benefits the patient. Similarly, Wachtel, Hermida, and Dhossche proposed that ECT should be considered a “treatment rather than a cure” and that patient relapse remains a concern even with m-ECT in place. Indeed, many of the reports we reviewed found that participants relapsed quickly when ECT was discontinued or treatment frequency reduced, requiring a readjusted m-ECT schedule and/or concomitant pharmacotherapy to confer therapeutic benefit, While our review demonstrates that there are presently no precise parameters and guidelines for administering m-ECT to persons with ASD, the demonstration that ECT regimens must be tailored to unique patient circumstances is in line with m-ECT paradigms among neurotypical individuals.




Self-injury and aggression in autism can become overwhelming and, one way or another, have to be treated.  Electroconvulsive Therapy (ECT) clearly is one option that may be available, depending on where you live.

If you stop the maintenance therapy, the behaviors will return.  Ideally you live near the hospital. 

In terms of what it is actually doing, I think we can compare it to an old computer whose screen keeps freezing, you just restart it and hope for the best.  Then you know it is time to look around for a new computer, before you lose whatever is on the hard drive.  ECT is like a system reset, without knowing what the underlying problem is. 

In the absence of an effective alternative, why not ECT?

Is there a pharmacological "reset button" for at least some aspects of some autism? A short course of steroids does something along these lines; you can even have a single dose, as in therapy for an asthma attack/exacerbation.  Suramin is not really a monthly "reset", because the drug has a very long half-life and so it is there all month long, just at a slowly reducing level.  

Sunday 24 January 2021

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


·      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.


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.


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.


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.


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. 



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.