Alternative Benzos for Catatonia, SIB and Aggression in Autism

Layman Summary. Alternative benzodiazepines may be more effective than traditional benzos for self injurious behaviors (SIB), aggressive behaviors and catatonia in autistics. Smith et al (Vanderbilt)., discuss treatment in 5 profound autism cases. [Earlier blog posts on Benzo's]

Traditional benzos were not effective in reducing their symptoms. Two of the five had to be first stabilized with inpatient infusions of midazolam (traditional benzo used in anesthesia) and dexmedetomidine (selective alpha-2 adrenergic receptor agonist used in sedation) due to severity of symptoms.

Therefore, the authors tried using alternative benzos (by which they mean "not-lorazepam"), including clonazolam and etizolam. These drugs were chosen due to their higher potency and ability to cross the blood-brain barrier more easily than traditional benzos. 

Clonazolam is a high-potency benzo that is structurally similar to clonazepam, while etizolam is a thienodiazepine derivative. The paper does not go into extensive detail on the molecular mechanisms of alternative v traditional benzos. However, the authors note that alternative benzos have a higher potency and a different pharmacokinetic profile than traditional benzos. These differences may be due to structural variations in the chemical composition of alternative benzodiazepines that affect their binding affinity and activity at GABA receptor, which is the primary target of benzos.

However, the authors note that there are potential risks associated with using alternative benzos, such as dependence and withdrawal symptoms (due to longer half-life), which must be carefully monitored. Neither clonazolan or etizolan are approved for use in the US though they have been used in other countries. 

And I do want to highlight that withdrawal should not be taken lightly. Psychiatrists seem to have an arbitrary weaning off period for drugs. For example my "specialist" doc, weaned me off  Clonazepam in just 3 days since I had apparently grown tolerant to it. Half doze on day 2, stop on day 3. Day 4 was a massive Grand-Mal seizure. But it doesn't matter if the body is tolerant to the drug or not, you cannot subject body to shock with these quick withdrawals - a longer weaning off period would have been much more advisable instead of subjecting me to unnecessary health complications that impacted me for months. It should be weeks and not days of weaning off in the case of autistics.

In the meantime, the authors find that "clonazepam, diazepam, valproic acid and mematine" and reducing anti-psychotic meds were effective in reducing the severity of SIB and catatonia (see Twitter thread explaining).

Here are some twitter posts around that

• SIB: harm to self that results in physical injury, tissue damage, or pain.eg:  head-banging, self-hitting, and biting oneself. The severity can range from mild to severe and can lead to significant medical complications, such as tissue damage, infections, and scarring.   
• Aggressive behaviors result in harm to others and includes physical aggression (eg, hitting, kicking, biting, or throwing objects) as well as verbal aggression (eg: shouting, cursing, or threatening).
• Catatonia manifests as a state of immobility, stupor, and unresponsiveness, as well as excessive motor activity, agitation, and abnormal postures or movements. 

(GABA-A Receptor)

Reference
Smith JR, York T, Warn S, Borodge D, Pierce DL, Fuchs DC. Another Option for Aggression and Self-Injury, Alternative Benzodiazepines for Catatonia in Profound Autism. J Child Adolesc Psychopharmacol. 2023 Apr 6. doi: 10.1089/cap.2022.0067. Epub ahead of print. PMID: 37023406.

https://pubmed.ncbi.nlm.nih.gov/37023406/  

Crip Time needed anon

I've been feeling the need for Crip Time a lot recently. This semester has been rather grueling in terms of what needs to get done in a given time, and keeping up with my non-disabled peers and feeling productive.

[What is CRIP TIME ]

[related Post: AUTISTIC BURNOUT]

Apr 7 is World Health Day

Its the day the WHO was founded in 1948. 

Urgent need to step up to the healthcare needs of autistics. 

Biomedical research is a CRITICAL part of this solution. 

When in doubt choose kindness

Oromotor skills in Autism

Based on review of research published between 1994 and 2022 on oromotor functioning in autistic individuals, 

key takeaways: 

• Oromotor functioning plays a foundational role in spoken communication and feeding.
• 81% of included 107 studies report a significant oromotor challenges related to speech production, nonspeech oromotor skills, or feeding 
• Studies used various methods to investigate oromotor functioning in autistics
• Behavioral measures -  tasks such as tongue protrusion, lip closure, and oral diadochokinesis. 
• Parent report measures - questionnaires and interviews. 
• Medical record review - examining medical records for information on feeding / swallowing difficulties. 
• Neuroimaging techniques -  fMRI & MEG.

• The findings suggest that oromotor challenges are common in autistics, but more research is needed to better understand the nature / extent and their impact on communication and feeding.

Some limitations of this paper include

• numerous inclusion and exclusion criteria, which may have excluded relevant studies eg: non-English publications, pre 1994 studies etc
• wide variation in studies re sample characteristics, behaviors analyzed, and research methodology, which makes it difficult to draw definitive conclusions. 
• did not include a meta-analysis, which would have allowed for a quantitative synthesis of the findings across studies. 

Maffei MF, Chenausky KV, Gill SV, Tager-Flusberg H, Green JR. Oromotor skills in autism spectrum disorder: A scoping review. Autism Res. 2023 Apr 3. doi: 10.1002/aur.2923. Epub ahead of print. PMID: 37010327.

Anxiety in ASD

Went for a guest lecture by Dr. Trenesha Hill, Asst Prof at U Nebraska Medical Center. 

What caught my attention was atypical/autistic anxiety (vs non-autistic-anxiety) as being related to core characters of Autism. Especially the suggestion that hypersensitivity (ie: sensory differences) was a main factor distinguishing autistic-anxiety from non-autistic anxiety. Totally worth investigating the sensory aspect which I wish this study had done. 

A kind word can change someones entire day

Towards a more Humane Society. Contemplating a different emotion and writing one line each day on it. #MentalHealth. This month on KINDNESS

 

Two Days and A Month

46th anniversary of 504 sit-in

46 years ago, Apr 5, 1977 was the start of the longest sit-in in US history. 

On April 28, 1977, Secretary Joseph Califano signed the regulations.

"Without 504 — there might well be no Americans with Disabilities Act, that finally brought us up to parity with federal civil rights laws covering gender and race."

https://dredf.org/504-sit-in-20th-anniversary/short-history-of-the-504-sit-in/
 

Hold opposed ideas in the mind at the same time

The test of a first-rate intelligence is the ability to hold opposed ideas in the mind at the same time and still retain the ability to function. One should, for example be able to see that things are hopeless yet be determined to make them otherwise - F. Scott Fitzgerald.

Kindness costs nothing but its value is immeasurable

Where do the behavior autistics go?

In this month of autism acceptance and autism belonging, I want to point to a very concerning issue. 

When your disability is TOO VISIBLE, you are made INVISIBLE by society, warehoused somewhere where you can be out of sight and out of mind of society. 

This is the plight of many adult autistic peer friends that I know. The adult autism world of inclusion and belonging, only wants the good patients. Special education had never wanted "behavior kids - the ones with meltdowns, aggression and SIBs", so will just house them in some classroom or NPS, ready to spit them out at age 22 at which point their legal obligation ends under IDEA. 

I truly believe that there is a biological basis to all this SIB, aggression and other behaviors. There also seems to be confusion that such behaviors are seen only to those with low IQ or lesser speaking ability or whether you have access to communication.  I know an equal number of autistics, considered "moderate" or "high" in childhood who reach exactly the same place by early/late teen-hood;  tossed between psychiatric facilities or stuck at home with their families. Most are heavily medicated with pharma cocktails that don't seem to work at all for autistic physiology.  

The adult autism world does not want these "behavior autistics" either. Adult Day Programs (ironically meant for autistics) don't want them, even Group Homes for autistics want only the 'well-behaved' and easily manageable ones. 

Let me give you an example of 2 peers that I know -  one sits in the corner all day and is regarded as a model student by that Adult Day Program. The other peer is at home with his aging parents as no day program will take him - "too much behaviors." And he is just one of the many dozens I personally know and grew up with in this scenario.

Behavior therapy agencies will tell the family that that autistic is "not a good fit" for their program. If behavior therapy agencies don't want to help with behavior, then why is the  word "behavior" in their name at all. Autism professionals too will find PC alternatives that essentially say "not a good fit" for the autism they don't want to work with. 

Autism Clinics at major hospitals too, end at age 18. Did the autism and behaviors magic away in adulthood. 

Essentially the entire autism professional space is rending such autistics even more invisible. 

And doing such a fantastic job of it that the other autistics (invisible disabilities/neurodiverse) don't know or believe our existence.  

In a recent twitter post an adult autistic pointed to lack of numbers of such adults as evidence that they don't exist - and since she herself had started to talk at only at age 3 after therapy; it must mean that ALL autistics must have regained speaking ability and inclusion sometime in childhood. 

Are you really surprised at this. When you are out of sight is out of mind of society; it also means nothing need be done to help.  And it merits some societal attention only when it makes it to the news in a dramatic fashion such as in the article below which will be lost in the in the quicksand of short public memory. 

And did I mention, it is incredibly hard to even find support staff as there are enough "easier" adult-autistics clients job market. So staff don't want these autistics either; everyone wants the easy button. 

There is only waitlists or rejection at every turn. 

Where are the services and supports for these adult autistics? What is the long term outcome? What is the plan?

It does not have to be like this. I truly believe that there is a biological basis to all this SIB, aggression and other behaviors.  Where is the biomedical research that looks for answers  as to what's going on at a physiological level so that we can work on targeted solutions. Given that traditional pharma is not working, when are we going to get targeted interventions and pharma that actually work with autistic physiology?

How can there be inclusion and belonging for these autistics unless we find solutions to some prior steps first?

Why is this not seen as an urgent need in autism research? 

And to the growing numbers of Neurodiverse community out there, the action I request of you is -  Include everyone, including the marginalized autistics. Help find solutions to these issues so that every autistic can be part of the dream of Inclusion and Belonging. 

https://www.rgj.com/in-depth/news/2023/02/07/months-at-reno-hospital-young-man-with-autism-has-nowhere-else-to-go/69860556007/

 

Autism and Movement Disorders

There has been research exploring the link between autism and movement disorders, particularly with regards to motor coordination and control. Some examples

• A 2013 study found that autistic children had difficulties with motor planning and control, particularly in tasks that required them to plan and execute a sequence of movements.
• A 2011 study autistic children had more severe motor impairments also had more severe social communication deficits.
• A 2010 study looked found autistics had poorer motor coordination and control (as well as more difficulty with tasks that required fine motor skills, such as writing and drawing) ; compared to non-autistic controls (3).
• A 2003 study looked at prevalence and found autistics were more likely to have motor coordination difficulties than non-autistics, suggesting a potential link between autism and movement disorders.(4)
• A 2000 study found autistic children with autism had deficits in both motor control and executive function (compared to non-autistic controls), suggesting that the two may be related (5).

While such studies provide some evidence of a link between autism and movement disorders, more research is needed to fully understand the relationship and potential implications for diagnosis and treatment.

The Point: This is an area of need for answers and translatable solutions