Wednesday, March 30, 2022

Life Expectancy of a Person With Autism/Asperger Syndrome is 39.5 to 54 Years! How Did I Miss This!

 

For years my  everyday has been filled with planning my son’s future; therapy, school, doctor visits, interventions, housing socialization, savings, special needs trusts, the list goes on. Always, always my focus has been building a good future for my son, and never once did I realize I could be fighting in vain, until I read this.


My family has suffered a lot of losses over the past 6 years, including the death of my mom and sister. The loss created a pressing collective desire for the living adult women in my family to regularly connect, and check in with one another, encourage each other, and share stories at risk of being lost with our generation and often simply to listen to the person who needed our ears the most. So, every week I hop on Zoom and sign on not knowing what the topic might be, but filled with anticipation for seeing the faces, that reflect my face, and hearing the voices of the women I love. During a recent call my cousin talked about her new role as a caregiver, brought on by her husband’s recent diagnosis of dementia. We quickly connected around the truth that caregivers, no matter the patient, live a shared experience of constantly seeking to bring balance into a world we no longer control. As we spoke, she mentioned that dementia is an illness of the brain, that impacts the health of the entire body and it would reduce her husband’s life span, which was extra disturbing because he has gotten this diagnosis younger than most. When she said that, although I physically remained on the call, I had emotionally checked out. I felt such fear in that moment, fear that autism would lead to an early death for my son! All I have done for years is plan for my son’s future. Everything is always about the future and ways to make it better; regular therapy, school, interventions, socialization, housing, savings, special needs trusts. But, right at this moment I could not wait for the call to end so I could get assurance that this was not the case, and my son would have the same life expectancy of any other 23-year-old.  Always, always my focus has been on building a good future for my son. and never once did I realize I could be fighting in vain, until I read this.

 

“One of the most important investigations of recent years revealed that average life expectancy of a person with severe autism is 39.5 years, rising to only 58 years for those with high-functioning autism, or Asperger syndrome.

 

In this moment I felt like I had been thrown back to the day when I opened my computer to look up the word autism and read: “A permanent developmental disability requiring life long care, with no know cause or cure”. That felt like a death sentence, a concept that I could not comprehend, just like reading the paragraph above.

 

The difference today is, that I know to read on, I know a lot of information get’s printed that only tells part of the story, I know that we have already defined the odds, I know there is hope. And, I know this because I did my research, I read everything and I did everything the experts said to do to help my son, and it has worked. When Nick was diagnosed, I sat in waiting rooms while he did therapies and mothers and fathers shared everything they know. Today there are fewer waiting rooms, and fewer places for our families to share information freely. And, that is why I am sharing this article with you, and I beg you to read it, no matter how hard it is to read. And after you read it, share it with your doctors and your friends, so they share it with others. This is how we help our kids, and how we and we can change the poor health outcomes and high death rates in autism, by sharing information.

 

I know for sure that if we are diligent, we can keep our kids healthier and we can demand that other caregivers not phone in care, but provide the care they deserve to live their healthiest and longest life.

 

So here is the article I read. Read, share and change this outcome……………………………..

 

“We must first recognize ASD as a whole body disorder”

Autism, or Autism Spectrum Disorder ASD, is traditionally seen as the result of behavioral and neuropsychiatric dysfunction. However there is a strong evidence that various physical, or biomedical, problems can directly cause many autism-related symptoms and behaviors.

There is also growing evidence that physical health-related problems can, through their influence on brain development and functioning, cause the core autism symptoms that form the very diagnosis of the disorder.

 

It is an undeniable and sad fact that individuals with autism suffer much poorer health and shorter lifespan than their peers without autism. One of the most important investigations of recent years revealed that average life expectancy of a person with severe autism is 39.5 years, rising to only 58 years for those with high-functioning autism, or Asperger syndrome.

It is therefore very welcoming to see a peer-reviewed research paper that highlights a number of physical problems associated with autism, and discusses how to overcome the roadblocks and challenges in providing appropriate health care for those affected by autism.

 

“There is a wealth of scientific data demonstrating the over-representation of various mental and physical health conditions alongside ASD. There is, however, still insufficient recognition amongst healthcare professionals that such symptoms could be related to comorbid physical health conditions rather than being commonly dismissed as “part of autism” or “autistic behaviors”.

In this paper, we provide a literature review of the key physical comorbidities identified in people with ASD covering the areas of neuroinflammation and immune dysregulation, GI dysfunction, metabolic abnormalities, as well as seizure disorders such as epilepsy.

We also discuss how healthcare professionals…have a duty to be informed about the challenges and considerations in identifying physical comorbidities in this population.”

 

In the paper ‘Bridging the Gap Between Physical Health and Autism Spectrum Disorder’, recently published in the journal Neuropsychiatric Disease and Treatment, the authors explain how autism does not typically appear as a stand-alone condition.

Various health conditions that are common in autism can not only have a detrimental effect on daily functioning, social communication and behavior, but they can also increase the risk of developing serious medical conditions and lead to early mortality.

The paper highlights some of the conditions affecting the immune and gastrointestinal systems, metabolism, and brain function in autism. It discusses how professionals, working with those with autism and their parents and care givers, should recognize the impact of such conditions on individuals’ lives and long-term wellbeing.

 

The authors lay out the argument that the main barrier to better awareness and recognition of health issues in autism is the paradigm within which many healthcare professionals operate that erroneously sees autism and all associated symptoms and manifestations as being solely the result of behavioral and neuropsychiatric dysfunction.

 

Dissolving myths about poor health outcomes in autism

Most medical conditions are significantly more prevalent in individuals with autism than in typical population. They span a whole range of different disorders affecting various systems of the body including neurological – involving both central and autonomic nervous systems – immune, gastrointestinal, and metabolic disorders.

 

Poor health outcomes and early mortality in autism are often explained away solely by the fact that individuals with autism are less able to communicate their symptoms to healthcare professionals, are more likely to skip regular health checks, and may avoid visiting their GP altogether.

 

While such factors certainly could contribute to negative health outcomes in some cases, their role is dwarfed by the evidence of physical health problems being not only persistent during the whole lifespan, but also being intrinsically linked to the very emergence of autism.

 

Results from multiple large scale studies have shown that early-life health conditions differentiate babies and toddlers who are at high risk of developing autism. Infant dysregulation and signs of physical distress such as feeding and sleeping difficulties, and abnormal crying, can be used as red flags for early autism screening.

Children who are exposed to pregnancy or birth complications, such as preeclampsia, premature separation of the placenta, meconium-stained amniotic fluid, or shortage of oxygen during birth, are much more likely to be diagnosed with autism later on.

 

More importantly still, medical problems also override genetic factors for autism.  In pairs of identical twins where only one twin has autism researchers found significantly higher rates of autism in those siblings who had a history of early medical problems, such as fetal distress and hypoxia during delivery, minor infections (for example throat or ear infections), allergies and seizures. At the same time their genetically identical siblings who did not experience such adverse physical events often did not develop autism.

 

What can be done to improve poor health and high death rates in autism?

Recognizing the physical problems in individuals with autism can be challenging. The paper explains the main reasons why and how to overcome them. 

One of the barriers to effective identification of physical issues in autism is that their expression can be atypical. Individuals with autism often respond to pain and discomfort with what the others see as ‘odd’ or challenging behaviors—for example aggression or self-injurious behavior in individuals with autism can be the primary symptom of a hidden physical condition.

However, the largest roadblock to better recognition and treatment of health problems in autism, as identified by the authors of this paper, is the framework within which most healthcare professionals operate, and how they view their patients with autism.

In many cases a healthcare professional will erroneously believe that autism is solely a behavioral dysfunction. He or she will not be familiar or not even aware of the mountain of scientific data on the intrinsic connection between autism and physical health.

 

“Symptoms such as grimacing, appetite disturbances, insomnia and strange postures are not core features of ASD. A considerable volume of scientific evidence points to the possibility of an underlying physical cause to such behaviors. To avert diagnostic overshadowing, screening for physical conditions should be initiated when such behaviors are observed.”

As a result of the wrong paradigm in which they see their patients with autism, the healthcare professional will not be attuned to the high risk their patient faces and the physical strain they could be under.

 

Healthcare professionals will also not be attuned and able to recognize symptoms of medical problems when those manifest simply as ‘odd’ or challenging behaviors. They will instead dismiss those as ‘autism behaviors. This can happen even when the symptoms could be indicative of serious and potentially deadly medical issues.

 

Finally, the authors recommend that in order to reduce morbidity and preventable death in autism it is of utmost importance to provide regular physical health checks and to maintain high level of clinical suspicion towards physical health problems in autism.

 

Sala R, Amet L, Whiteley P, at al. Bridging the Gap Between Physical Health and Autism Spectrum Disorder.
Neuropsychiatr Dis Treat. 2020;16:1605-1618 https://doi.org/10.2147/NDT.S251394

Monday, December 6, 2021

How to Make Sure Kids With Autism Reach Their Potential

Slow and steady and never give up! 


When Nick was 8 years old a behavioral agency informed me they would be ending his program. When I asked why, I was told in their professional opinion he had plateaued. 


I will never forget how this so called expert stood before me, straight faced , emotionless and explained how children with Autism reach their potential around age 5 after which they don't expect to see much progress or significant change and they believed this to be he case with Nick. I was so angry. I literally yelled at her "Plateaued!!!. On what planet does any human plateau at 8!" 


How dare anyone who is charged with helping children, pass this information on as if it was fact. If I had been another mom, I might have believed this "Expert" and given up right then and there and robbing my child of the opportunity to become his best self. Instead, I refused to let anyone tell me my son was without potential and his developmental life was over. I mean who writes off an 8 year old! 

I am so glad I did not listen, because she could not have been more wrong! 

For the past 21 years we have worked everyday to expand Nick's capabilities and it has paid off. When he was 8 going to the dentist meant being totally restrained. Today he sat in the dentist chair unrestrained, as the doctor drilled and filled his first cavity. Not a scream, or a dangerous wiggle, or any breaks to get the job done!

I know his progress does not look like a typical kiddo, it looks like Nick, slow and steady, up and down, forward and back, but in the end all small steps forward. Our goal is to help Nick become as independent as possible and the version of him he can be, not he best version of anyone else. We constantly introduce new things, repeat known things to help him achieve mastery. We always keep in mind, just because he didn't like it at 6, doesn't mean he won't like it at 8 or 10. Or just because he couldn't do it at 12 that doesn't mean he won't be able to do it at 20. We just keep going slow and steady until suddenly we notice a thing...

"Nick followed 3 multistep instructions independently."
"Nick used a full sentence, unprompted."
"Nick did great in the dentist office today." 
"Nick made breakfast all by himself." 
"Nick was not aggressive today."
"Nick offered to share his food."
"Nick just worked independently for 1 hour." 
"Nick figured out how to work the paper shredder by himself."
"Nick made his bed without any assistance."
"Nick did all of chores without any prompts."

These success's may not sound like much to all parents, but for me and Nick they mean the world, literally. Every one of these achievements is directly connected to Nick's independence and his independence is connected to his quality of life including how much time he spends in the community. 

It has not been easy. That said, he had not plateaued then, and at 23 he has still reached his "Plateau".  Nick is a human being and just like the rest of us, when given the opportunity to learn he will. It's been a lot of work for me and Nick, but I am so grateful I didn't accept that my 8 year old Nick had plateaued.  



Thursday, November 18, 2021

Parenting - Gender Identity and Sexuality is More Varied In Autistic People Than the General Population

 

This entire topic makes my head want to explode. This on top of Nick's autism is a lot to think about! But here goes!!!

Since birth I have looked at my child, and labeled him all things associated with his sex assigned at birth, male.  

As the parent of a child with autism, my child does not have the social, emotional or language skills to express feelings on everyday matters, much less something as complicated at this. 

Nick's disability has removed him from typical social interactions. Nick goes no where alone and has no friends who are not family, therapist or others in a special needs community. So, there are no clues there. 

Nick's disability also means that I have made the choices when it comes to clothes and activities which traditionally might give me clues to Nick's gender identify. That said, Nick has never walked into the store with me and picked up a dress and asked to buy it. 

Like all parents I want Nick to live a full and happy life. I'm an adult with a lifetime of experiences behind me and a desire to understand. Still this is complicated in my mind I have to constantly fight against my lifetime of social programming. As I am learning the degree to which the world is not simply Boy/Girl I want to help Nick to live a life feeling understood and seen when it comes to sex, gender and physical attractions. Since we cannot verbally discuss this, my first step has been to observe Nick. Here's what I have so far.  

1. Nick's gender identify and sex assigned at birth all appear to be male. 

2. Nick always wants to talk to the girls, and Nick tends to ignore the guys. Nick has that usual physical young man reaction to girls he finds attractive, so I'm confident where his physical attractions lie. 

3. I have absolutely no idea who he is emotionally attracted to. It might be female because of his strong connection to me. However, at this time I do not know for sure. 

Beyond that I am clueless.  Nick lacks the capacity to have an emotional discussion, much less verbally identify these complicated emotions. 

Below is an easy read on the topic for others trying to wrap your heads around this. 


ttps://www.spectrumnews.org/news/gender-and-sexuality-in-autism-explained/

Cite this article: https://doi.org/10.53053/YBTA7630

Gender, like autism, exists on a spectrum. In the 1990s, as growing numbers of children sought care related to their gender identity, clinicians and researchers began to notice a trend: An unexpected number of these children were autistic or had autism traits. The observation has spurred researchers to work to quantify the association.

The field is beginning to get a clear picture of the extent to which the two spectrums overlap: Gender identity and sexuality are more varied among autistic people than in the general population, and autism is more common among people who do not identify as their assigned sex than it is in the population at large — three to six times as common, according to an August study1. Researchers are also making gains on how best to support autistic people who identify outside conventional genders.

Here we explain what scientists and clinicians know — and don’t know — about gender and sexuality in autistic people.

What is gender identity?
Gender identity is a person’s internal sense of their own gender. People who identify as the sex they were assigned at birth are called ‘cisgender,’ or cis, whereas those who do not may use terms such as transgender, nonbinary or gender fluid. Researchers often use the phrase ‘gender diverse’ as an umbrella term for different gender identities, similar to the way some people use ‘neurodiverse’ to describe variations in cognitive style, including autism and attention deficit hyperactivity disorder.

How common is gender diversity among autistic people?
Many studies have examined the prevalence of gender diversity among autistic people. One of the most frequently cited studies found that about 15 percent of autistic adults in the Netherlands identify as trans or nonbinary; the percentage is higher among people assigned female at birth than among people assigned male, a trend seen in other studies2. By contrast, less than 5 percent of adults in the Netherlands’ general population have an identity other than cisgender3. And in a 2018 study in the United States, 6.5 percent of autistic adolescents and 11.4 percent of autistic adults said they wished to be the gender opposite of what they had been assigned at birth, compared with just 3 to 5 percent of the general population4. This study also found that, on two measures of autism traits, higher scores were associated with a higher likelihood of gender diversity. A 2019 study found a similar association in children who are not diagnosed with autism5.

Similarly, autism appears to be more prevalent among gender-diverse people than it is in the general population. A 2018 Australian survey of transgender adolescents and young adults found that 22.5 percent had been diagnosed with autism, compared with 2.5 percent of all Australians. Some experts estimate that 6 to 25.5 percent of gender-diverse people are autistic6.

Sexuality also appears to be more varied among people with autism than among those who do not have the condition. Only 30 percent of autistic people in a 2018 study identified as heterosexual, compared with 70 percent of neurotypical participants7. And although half of 247 autistic women in a 2020 study identified as cisgender, just 8 percent reported being exclusively heterosexual8.

Why is the prevalence of gender diversity higher in autistic people than in the general population?
Social experiences are likely a main component, experts say. Compared with neurotypical people, autistic people may be less influenced by social norms and so may present their internal selves more authentically. “You could then understand the co-occurrence as perhaps a more honest expression of underlying experiences,” says John Strang, director of the Gender and Autism Program at Children’s National Hospital in Washington, D.C.

It’s possible that autistic people may come to conclusions about their sexual identity differently than neurotypical people do, says Jeroen Dewinter, senior researcher at Tilburg University in the Netherlands. Some autistic people have told him they would be likely to identify as bisexual after one same-sex sexual experience, but neurotypical people may be less likely to adopt that terminology based on a single same-sex encounter.

Biological factors may also play a role. Exposure levels to hormones such as testosterone in the womb may be linked to autism, some research shows; increased prenatal testosterone may also lead to more typically ‘male’ behaviors and to less common sexualities and gender identities, although there is some evidence against that link9,10. Regardless, prenatal testosterone does not explain why autistic people assigned male at birth might identify as more feminine, Dewinter says. But the biology of sexuality and gender in the general population is not well understood either.

Experts say it’s likely that a combination of these and other factors contribute to the increased variety of gender identities and sexualities among autistic people.

What does this mean for clinicians and caregivers?
Clinicians who work in gender clinics may want to screen for autism, and those working in autism clinics may want to discuss gender identity and sexual health, researchers say. They should also be sensitive to different information processing styles, Dewinter says. Some autistic people may struggle to express their feelings regarding gender. Even when they do express these feelings, they often face doubts from clinicians because of stereotypes about autistic people, which can block their access to medical care. In a 2019 paper, one autistic and gender-diverse person wrote, “The combination is seen to be too complex for the majority of clinicians, which led to long waiting times for specialized psychiatric care”11.

Screening tools may also need to be updated to better identify autism among gender-diverse children, just as they need to be adjusted to spot the condition among girls. “Clinics are working to understand what autism looks like in girls and women, and we’re going to have to take that same question with the gender-diverse youth,” Strang says. Identifying autistic children who may need support in affirming their identity is particularly important because some may seek medical interventions, such as puberty blockers, that are time-sensitive, he says.

Clinicians should be aware that autistic people may present their gender identity differently than neurotypical people do. Some autistic people who transition from one gender to another are not aware of how they also need to change their social cues, such as how they dress, if they want to clearly communicate their gender identity to others. Clinicians can help autistic people navigate these transitions and ensure they have the same access to gender-affirming medical care that neurotypical people have, says Aron Janssen, associate professor of psychiatry and behavioral sciences at Northwestern University in Chicago, Illinois.

How do autistic people best learn about gender and sexuality?
For years, many parents and caregivers believed that autistic people, particularly those with intellectual disability, shouldn’t be given information about sexuality and are less interested in relationships than neurotypical people are, Dewinter says. That belief is changing as researchers recognize that providing relationship support is important to ensure the overall well-being of neurodiverse people, just as it is for neurotypical people. Belonging to any kind of minority group makes a person more susceptible to mental health problems, because of a phenomenon known as ‘minority stress.’ For a person who is both neuro- and gender-diverse, belonging to several minority groups can intensify those problems12.

More comprehensive and inclusive sex education can help. In ongoing surveys, Eileen Crehan, assistant professor of child study and human development at Tufts University in Medford, Massachusetts, has found that autistic people want information about sexual orientation and gender identity more than typical people do. Research has shown that lesbian, gay, bisexual, transgender and queer/questioning (LGBTQ+) adolescents who have more inclusive sex education in school have better mental health. But only 19 percent of U.S. sex-education materials are LGBTQ+ inclusive, according to the advocacy group GLSEN, creating an extra barrier for autistic LGBTQ+ people. “You have two hoops to jump through to get the information that you need,” Crehan says.

Where is the research going next?
Early research focused on measuring the prevalence of diverse gender identities in the autism community — and vice versa — but now researchers are increasingly turning to questions about how best to support autistic people who are gender-diverse. To do that, they’re working closely with the autistic community, ensuring autistic people guide research priorities. “I really think it’s incredibly important to lift up the voices in the community themselves, and I’m grateful to see that’s where the field is going,” Janssen says.

Cite this article: https://doi.org/10.53053/YBTA7630

Wednesday, November 17, 2021

Autism and Sleep Deprivation - A Family Problem and New Study May Give Clues

Two things that don't go together in our house, sleep and Nick! Never have, maybe one day they will! 


A study published in  September's Sleep Medicine has developed and validated a new cut-off value for the Children’s Sleep Habits Questionnaire for autism (CSHQ-autism), a common tool used to screen for sleep difficulties in autistic children and adolescents up to 17 years of age.

Poor sleep is a side effect of  Autism you rarely hear about. Yet over time it drains a family as much as any aspect of autism and offers up a host of serious negative health consequences from heart attacks, to stroke to diabetes.  
Nick is 23 and he has NEVER been able to sleep through the night without assistance (Drugs both OTC/Prescriptions). Every night I put Nick to bed, then I put me to bed. I roll up in the sheets, settle in hoping that tonight will be the night I sleep all the way through! Around 2 AM, I hear Nick jumping, scripting language from videos, and vocalizing things that are not words, just sounds and yelling "Mom". So, no tonight is not the night.
 
This is my life, and as a result, I have been sleep deprived for his entire life. From birth he suffered gastrointestinal problems, and his tummy pain left we up all night trying to sooth him. As he approached18 months - before his diagnosis - he still was not sleeping. Instead of sleeping he would crawl out of his crib in the middle of the night, locate video's and play them. And it's been the same ever since. Nick is medicated every night so he can sleep. Despite medication, that should help him sleep for at least 8 hours - Nick is always one tiny sound or thought away from being wide awake. Nick goes to sleep thinking about video's and how he can get to them. I go to sleep making sure I've shut everything down, disconnected, and put everything away, including computers, TV's, tablets, Alexa, CD Players, Games that make noises and all things that can be used to play video's or repeat noises.
 When this began I never imaged it would continue for a lifetime, but it has. One more reason why it is so important for us to gain more understanding.


Tuesday, October 19, 2021

Wellness Toolkit; Information & Tools for Health and Safety for Individuals and all Stakeholders

A great resource for families!  

DDS Wellness Toolkit

The DDS Wellness Toolkit is a new section of the DDS website focused on providing information and tools related to health and safety for self-advocates, direct support professionals, and vendors or providers. New topics, tools, and information will be added on an ongoing basis.
You can also find information about the DDS Wellness Toolkit and emergency preparedness bulletins here: https://www.nlacrc.org/publications-resources/emergency-preparedness/
Kit de herramientas de bienestar del DDS
El Kit de herramientas de bienestar del DDS es una nueva sección del sitio web del DDS que se centra en proporcionar información y herramientas relacionadas con la salud y la seguridad para los autogestores, los profesionales de apoyo directo y los proveedores o proveedores. Se agregarán nuevos temas, herramientas e información de forma continua.
Para obtener más información, visite:
También puede encontrar información sobre el kit de herramientas de bienestar del DDS y los boletines de preparación para emergencias aquí: https://www.nlacrc.org/publications-resources/emergency-preparedness/
The resources listed above are for informational purposes only. NLACRC does not guarantee or warrant the accuracy, relevance, timeliness, or completeness of the information contained on any linked website. Any reference to a specific product, process, or service does not constitute or imply an endorsement by NLACRC of the product, service, or provider. The views and opinions expressed in any linked website do not necessarily state or reflect those of NLACRC. 

Los recursos enumerados anteriormente son solo para fines informativos. NLACRC no garantiza ni garantiza la exactitud, relevancia, puntualidad o integridad de la información contenida en cualquier sitio web vinculado. Cualquier referencia a un producto, proceso o servicio específico no constituye ni implica un respaldo por parte del NLACRC del producto, servicio o proveedor. Los puntos de vista y opiniones expresados ​​en cualquier sitio web vinculado no necesariamente establecen ni reflejan los de NLACRC.
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