First-Responders Learn to Properly Approach and Aid those with ASD

First-responders are receiving trainings that are critical in helping those on the autism spectrum during an emergency.
(photo: bigstory.ap.org)

With the autism diagnosis rate rapidly increasing, an emerging issue is having safety officials develop a better understanding of how to properly aid those on the spectrum. Approaching those with autism when they are in danger takes great precaution.

For instance, 14-year-old Nick from Vancouver had a fall when he was at summer camp, and although he had a serious leg injury, it was difficult to express this to first responders. Medics were unable to diagnose him, as Nick, who is autistic and has difficulty communicating, could not properly express what was wrong. Nick’s mother, Kari, felt that the medics should have had a better approach to understanding what the injury was, and it was clear they did not know how to work with someone on the autism spectrum. It was soon revealed that the medics did not have any training on how to address those with autism or other developmental disabilities.

Nick, who ended up having a broken hip and needed to undergo surgery, inspired workshops in his area to address ways to deal with emergencies when the individual has autism. With autism rates rising, more emergency services are configuring how to address those on the spectrum, and tend to the specific needs and concerns of parents.

Workshops are discussing some of the primary safety concerns for those with autism, including the fact that nearly half of all children with autism tend to wander. Furthermore, children with autism tend to be drawn to water. Therefore, it is essential to call police when a child with autism goes missing, and to check all sources of water. It is critical to think of places where a child likes to go, and the places and things that they might be drawn to.

Communicating with those on the spectrum can be difficult in times of crisis, as some individuals on the spectrum are nonverbal. Several police departments are implementing databases that aid children and adults who have trouble communicating due to a disability. For example, the Pensacola Police Department maintains a database, called the Take Me Home Program, consisting of a photo, physical description, emergency contacts, and information about the individual’s disability. If they are found alone, officers can pull up all the information that will further assist them in helping the individual.

In addition, many police departments within the U.S. and Canada are leading trainings to assist those with ASD, as part of crisis intervention training sessions. For many, it is the first time that training specifically focuses on those with autism. These trainings are increasingly more critical, as first responders should have a better understanding of how to approach and aid the increasing autistic population.

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Parental-Focused Interventions May Lead to Many Benefits in Children with ASD

According to a clinical trial, parental coaching interventions can lead to incredible improvements in young children with autism spectrum disorders (ASD). The Play and Language for Autistic Youngsters (PLAY) Project resulted in improved interactions between parent and child, along with other benefits for the children.

Richard Solomon, MD, who led the study at the Center for Developmental and Behavioral Pediatrics in
Ann Arbor, Michigan, states, “PLAY offers communities a relatively inexpensive, effective intervention for children with ASD and their parents”. The initial trial consisted of nearly 130 families, each with a child with ASD that is between the ages of 3 to 6 years old. The families were randomly assigned to one of two groups: they either received standard community services, or they received those services in addition to the PLAY Project.

Families from the PLAY project received three-hour home visits per month from trained and certified consultants. These consultants taught approaches to improve parent-child interactions, as well as social skill development in each child, through various methods of coaching, modeling, and the use of videotape followed by written feedback.

The PLAY Project promotes functional development in children on the spectrum, as well as enhance their playing skills, by enhancing parents’ interactional abilities. Through the trial, parents reported that they were able to engage their child in play sessions for up to two hours a day. Furthermore, coaching led to significant improvements in the child’s ability to initiate interactions with their parent.

Approximately half of the children that received consultation from the PLAY Project improved significantly in at least one category, compared to only a third of children who received standard services.  Dr. Solomon states, “We’re excited about these findings that offer a less costly and highly effective option, especially for children who are presently on waiting lists for high-cost services”. Furthermore, in recent years, similar studies have shown that parent-meditated programs, similar to PLAY, have shown quite promising results, by enhancing a child’s communication, attention, and ability to connect with others through social activities.

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Supporting the Learning Process for Children with ASD through Technology

Developments in technology have given children on the autism spectrum incredible opportunities to express themselves and grow. TalkingTiles is a new app that is being used to help develop a range of skill-sets for children on the spectrum, such as learning to read, learning about colors, and how to recognize safety signs.

The app is currently being used in the Mississippi Adolescent Center, part of the state’s Department of Mental Health. With many of the patients being autistic and nonverbal, the app has been an essential tool in helping children communicate their wants and needs without using words. Donna Horton, Director of Client Services at the center, states, “The kids fell in love with [the app].” With so many opportunities available for the child through the app, Horton continues, “[the app] is only limited by the imagination of the educator.”

“The cool thing about TalkingTiles [is that] we’ve seen a decrease in maladaptive behaviors”, Horton added. Through the app, kids are better able to express what they need, therefore reducing tantrums or poor behavior.

Furthermore, caregivers using the app can better express to the child what they plan to do with their day, giving the children a better idea of what their schedule is, offering them a sense of structure and security. Caregivers can explain where they are going (with a picture of a school, doctor’s office, etc.), and what activities they may participate in. TalkingTiles utilizes videos, pictures, and words that the children can use to help them communicate.

The essence of TalkingTiles is to help engage children in the various learning and therapy processes. Furthermore, the app is individually designed to help cater to the different needs of each child. The progress of each child is tracked, so that the caregivers can determine what the next step would be to enhance the child’s development.

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Are you an Autistic or a Person With Autism?

There is an on-going heated debate in the autism community, mainly between self-advocates and parental advocates on whether to identify as “autistics,” “autistic people,” or “people with autism.” This is not an argument about semantics by people who are excessively sensitive to political correctness, but rather an important discussion about how autistic people and their advocates want to identify themselves and be identified by others. The tricky part of this argument is that ultimately, both sides are on the same side, they just have a fundamental disagreement about the most empowering and respectful terms of identification.

Words and language are incredibly powerful, not just in the ways they allow us to express ideas and share information, but in the way subtle semantic nuances and social connotations can dramatically change the tone and attitudes implicit in communication and influence the ways they are received. All cultures have preferred terms for self-identifying, and it can be very confusing for people outside that culture who want to use the most respectful, appropriate, or politically correct terminology for identifying people as being of that culture.

Many self-advocates in the autism community and their allies prefer identifiers such as “Autistic,” “Autistic person,” or “Autistic individual” because they view autism as an inherent component of their identity as an individual, just as people choose to be referred to as “Muslims,” African-Americans,” or “Jewish.”

On the other hand, many parents of autistic children and autism professionals prefer the use of “person-first” identifiers; “person with autism” rather than “autistic person.” They want their children to be identified as children first or people, to emphasize their humanity and that they are, in fact, people first. Many parents are also very sensitive to judgment on their children’s behalf, and believe that for many people the word “autistic” carries negative connotations.

This movement for person-first language aims to emphasize the value of the person over the importance of the condition or disability.  This only seems to be an issue, however, with modifiers that are seen to be negative. For example, there is no hotbed debate (for now, at least) over whether it is inappropriate to refer to someone as a “diabetic” or “diabetic person,” and so you will rarely see or hear the phrase “person with diabetes” as a descriptor. So this attempt to neutralize a negative societal connotation through semantics, can actually serve to reinforce it.

Self-advocates also oppose person-first terminology because it seems to imply that they can be separated from their autism. They can’t be separated from their autism any more than they can be parted from their ethnic background. Nor should they be made feel that they should want to.  Self-advocates argue that it is impossible to affirm the value and worth of an autistic person without recognizing that they are autistic.

Both sides of the fence agree that using phrases like “suffers from autism” or “autism sufferer” are not acceptable terms and are harmful in the shaping of societal attitudes towards autism. To many self-advocates, however there is an implied “suffers from” in the person-first terminology. They don’t want to imply that there is anything unfortunate about their autism or that they would be better people if they were neurotypical people. Self-advocates want to be feel empowered by their self-identification, not apologetic.

Where the semantics and grammar collide, lies a fundamental question hidden deep between the lines: is autism something you have or something you are? From a non-linguistic perspective, it is both. Autism is expressed as an individualized set of neurological, physical, social, and/or psychological characteristics that mean it is something you have, in the same way I have red hair and pale skin. It is also fundamental to the formation of the identity of autistic people in the same way that I am Irish. Is it possible that the context, then that should determine the most appropriate identifying terms?

In writing this blog, we have always employed both person-first and descriptive-first terminology interchangeably to appeal to the most people and in response to subtle differences in context. In researching this posting, however, the arguments from the self-advocates are most persuasive, in good part because our society respectfully agrees to identify a people with the terms they prefer. That is why it is vitally important for the autism community to continue this debate so we can inform the rest of the world what is the preferred, appropriate way to identify autistic people with autism spectrum disorders. Please respond to this post with your opinion, but remember to be respectful. At the heart of this debate is the shared goal of creating a societal standard that is the most respectful to autistic people and conveys the empowering connotations that they deserve.

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How to Work With Autistic Peers

ICare4Autism is dedicated to building awareness and opportunities for people with autism spectrum disorders (ASD) in the workplace. Our Global Autism Workforce Initiative is developing programs throughout the US and abroad to connect autistic adults across the spectrum with training and employment opportunities appropriate for each individual’s unique interests, skill sets, and functionality. We aim to guide employers in the development of a more inclusive workforce, and are inspired by organizations such as Walgreens who actively seek to employ and provide appropriate training for people with cognitive and physical disabilities.

The upside of increased diagnosis of ASD is a broader awareness and understanding of autism beyond the autism community. Through fictional television characters, popular culture has provided glimpses into the unique character traits that can signify some form of autism and the many ways ASD can be beneficial in the workplace, although usually in over-dramatized roles as crime solvers, brilliantly quirky scientists, or crime solving scientists.  People are becoming more patient and accepting of the social difficulties many autistic people experience, and are increasingly more willing to learn how to relate and work with their autistic peers, because as we all know, autistic people have a lot to offer.

An article was published yesterday in the online version of Forbes Magazine called, “What You Need to Know About Working With Colleagues on the Autism Spectrum.” It is very encouraging in its message to be patient, reserve judgement, and employ their recommended tips to help build a work environment where everyone can perform to their best abilities. What is most encouraging, though, is the underlying subtext that it is very common to have autistic colleagues and that it is important for everyone to learn how to work with each other.

The article, co-authored by Forbes staffer Dorie Clark and Dr. Brent Betit, provides a comprehensive outline of tips and strategies for building effective professional relationships with autistic co-workers, and we invite you to add to this list or challenge any recommendations with which you disagree.

1)   Avoid eye contact if your autistic colleague does.

2)   Take their affect in stride – a flat tone of voice is a trait that can’t be controlled anymore than eye color or height.

3)   Listen carefully – many people with ASD lack understanding of the unwritten rules of communication and social interactions in the workplace. You may expect that you listen to their impressive knowledge of baseball statistics that they will feign the same interest in your cat’s cute antics. Listen with an ear to learn, not as an opening to share.  (BTW- your non-autistic colleagues probably don’t want to hear about your cat either)

4)   Minimize “social clutter” – if your colleague has a hard time fitting in and tends to be distracting in meetings, try holding video meetings. This can help everyone focus and stay on message.

5)   Embrace project management solutions – Adopt structural and workflow changes that help keep everyone organized and on track. Autistic people tend to work best within a structured environment.

6)   Embrace universal design – design a process that works for everyone, including professionals with ASD. Accommodating differences in the workplace can give you edge with recruitment and retaining the most talented workforce to build your business and your bottom line.

Let’s keep the conversation going. What do you want people with limited knowledge of autism to know about how to foster good working relationships with professionals on the autism spectrum? Please share your tips and insights by posting a comment below.

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New Federal Committee Will Boost Employment For Autistics

The U.S. Department of Labor announced that they are assembling a new advisory committee that will guide government officials on how to improve employment prospects for people with disabilities, including autism spectrum disorders (ASD). They are currently soliciting nominations for individuals to serve on the National Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities.

This follows the Workforce Innovation and Opportunity Act, which was passed in July. The committee will examine ways to develop competitive, integrated employment opportunities for people with significant intellectual or developmental disabilities, and make recommendations to the Secretary of Labor Thomas Perez.

The panel will also be consulted on improving an existing program that allows some employers to pay disabled workers less than the minimum wage through oversight and better implementation.

The new law also limits eligibility to work for less than the federal minimum wage of $7.25 per hour, which will significantly impact people transitioning from school to employment.

Nominations for members of the advisory committee are being accepted until October 14, 2014 and are open to members of the general public as well as elected government officials. For more information, you can visit the Federal Register website.

ICare4Autism is excited about this new advisory committee and hope that it will help us to facilitate our own Global Autism Workforce Initiative. ICare4Autism is currently developing programs that will make vocational training and employment referral services more accessible to people with autism and similar disabilities.

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Are Brain Waves The Key To Early Accurate Autism Testing?

Electro-encephalography testing measures brain activity in response to stimuli

According to a new study published Monday in the Journal of Autism and Developmental Disabilities, the brains of children and adolescents with severe autism react differently to specific types of audio-visual stimulation than those without autism spectrum disorders (ASD). These findings could lead to more accurate and objective means of diagnosing autism than the current behavioral methods of evaluation. Researchers also hope this can contribute to earlier diagnoses, as more and more research supports findings that early intervention and therapy are most effective.

This newest development in the search for reliable autism biomarkers comes from researchers at the Albert Einstein College of Medicine at Yeshiva University. Scientists there found that a non-invasive brain wave test shows promising signs for diagnostic screening for autism.

“Ultimately, we’re on the road to developing measures of brain activity that will help to diagnose or recognize autism,” said Sophie Molholm, associate professor of pediatrics and neuroscience at Albert Einstein College of Medicine and co-author of the study. “A major goal of autism research is to develop these kinds of measures so we can diagnose this disorder as quickly as possible.”

The team of Yeshiva researchers set out to test their theory that observing unusual sensory perception of autistic individuals via brain wave activity could be an accurate diagnostic tool. A pool of 43 children and adolescents between the ages of 6 and 17 with diagnosed autism were asked t complete tasks while undergoing an electro-encephalography test. Fitted with an electro-cap that records brain wave activity and processing speed through 70 sensors, each participant was asked to press a button every time they observed an image, a sound, or both simultaneously.

The subjects with the most severe autism responded more slowly to stimuli, particularly to auditory and audio-visual stimuli. While the study focused on older children, Molholm said that the results suggest that the same kinds of brain wave activity could be observed in younger children. The tests also indicate that common autism symptoms can be more accurately identified via biomedical markers such as brain wave activity.

This study comes on the heels of exciting research in the field of genomics, trace mineral ratios, and ongoing work to develop blood tests to screen for autism earlier and more reliably.  Currently, diagnoses generally begin at the age of three, even though symptoms can start to appear as early as six months. Because ASD presents differently in every individual and infants develop at different rates, often outgrowing delays.  Evaluations are also largely based on behavioral symptoms and can be subject to personal interpretation, leaving plenty of room for error.

“One of the things that one would hope is that you can take measures of brain activity that we find to be associated with these certain clinical symptoms and apply them at very early developmental stages and determine if it is likely that this person will go on to develop autism, for example,” Molholm said. “Or we can better understand what their strengths and weakness are, so we know what to target [with treatment].”

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Are You Sure It’s Autism?

Researchers from the University of California, Davis, MIND Institute released findings that some children who with an autism diagnosis may actually have a genetic deletion disorder. The misdiagnoses stem from similarities in developmental delays and social impairments common to both autism and the deletion of gene 22q11.2.

Children with 22q11.2 deletion syndrome have a reported autism diagnosis rate of 20-50%, but of the 29 children in the UC Davis MIND study with the syndrome, none met the strict diagnostic criteria for autism. This study, published online September 18 in The Journal of Autism and Developmental Disorders, demonstrates the need for more rigorous evaluations prior to diagnosis.

In addition to developmental delays, low to average IQs, and significant social anxiety, children with the gene deletion syndrome may also have mild to severe heart conditions, malformations of the head, neck, and palate, as well as weakened immune systems.

Children with this rare syndrome do not respond to autism treatment and further study must be conducted to develop more effective therapies to cultivate their communication skills, treat their anxiety, and help them to maintain focus.

The US National Institutes of health reports that the gene deletion affects approximately one in 4,000 people, and one in 68 are diagnosed with an autism spectrum disorder. More accurate diagnoses could have a big impact on these statistics as well as the ability to gauge the efficacy of different treatments.

“There are a variety of different avenues that might be pursued rather than treatments that are designed to treat children with autism,” said Kathleen Angkustsiri, the assistant professor of developmental behavioral pediatrics at the MIND Institute and the leader of the study. “There are readily available, evidence-based treatments that may be more appropriate to help maximize these children’s potential.”

According to Tony Simon, professor of psychiatry and director of the chromosome 22q11.2 deletion program at the MIND Institute, one of the main differences in the social impairments between children with autism and children with the syndrome is that the latter group is often very socially motivated.’’

“They get a lot of pleasure from social interaction, and they’re quite socially skilled,” he stated in the study press release. “If you put them with their younger siblings’ friends, they function very well in a social setting and they interact well with an adult who accommodates their expectations for social interaction.”

While doctors largely rely on behavioral analysis in the diagnosis for autism, there is a lot of research currently being conducted to find other means of screening including blood tests and the search for reliable biomarkers.

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Scientists Discover Possible Way to Prune Extra Synapses In Autism

NrCAM protein may be key to pruning extra synapses and treating autism

There has been a lot of exciting research published in the past few months about the autistic brain and genes. The latest discovery comes from the University of North Carolina School of Medicine, and could lead to the development of new medications and therapies for the treatment of autism spectrum disorders (ASD).

The UNC study, lead by Patricia Maness, PhD and professor of biochemistry and biophysics, found that knocking out the gene NrCAM increases the number of dendritic spines on excitatory pyramidal neurons, which earlier studies have concluded results in too many synaptic connections that have been strongly linked to autism. In plain speak; scientists discovered a gene that influences the development of certain extra connections in the brain that make autistic brains function differently than others.

“Basic science in autism is converging in really exciting ways,” Maness said. “Too many spines and too many excitatory connections that are not pruned between early childhood and adolescence could be one of the chief problems underlying autism. Our goal is to understand the molecular mechanisms involved in pruning and find promising targets for therapeutic agents.” 

This study comes on the heels of a study from Columbia University that found an overabundance of the protein MTOR in mice bred with a rare form of autism. They used a drug to limit the mice’s MTOR, which decreased the dendritic spines, thus pruning the extra synapses, resulting in a significant decrease in the social behaviors associated with autism. This drug causes serious side effects, however, and will not become a viable treatment for autism. Also, the location of MTOR protein inside cells makes it particularly difficult to target. 

It isn’t yet known whether or not NrCAM and MTOR are linked, but Maness is now moving on to determine whether the decreased NrCAM protein can activate the MTOR protein. If so, the NrCAM protein may be a viable target for autism therapy, as it is much more accessible than MTOR. 

The UNC study published in The Journal of Neuroscience found that the NrCAM protein works with two other molecules to form a receptor on the excitatory pyramidal neurons that allows dendritic spines to retract and all those excess synapses can be pruned to allow brain circuits to function properly. 

“There are many genes involved in autism, but we’re now finding out exactly which ones and how they’re involved,” continued Maness. “Knowing that NrCAM has this effect on dendrites allows us to test potential drugs, not only to observe a change in behaviors linked to autism, but to see if we can improve dendritic spine abnormalities, which may underlie autism.”

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Too Much Copper + Not Enough Zinc = New Autism Biomarker

In the ongoing search for ways to screen for autism beyond behavioral symptoms, a new study has uncovered another potential biomarker for autism spectrum disorders (ASD). The collaboration between Mudanjiang Medical University in China and Norway based researchers has found a potentially significant difference in the ratio of trace minerals copper and zinc in autistic children.

Both zinc and copper are necessary in the body, where zinc needs to be in good and constantly replenishing supply and copper levels should be relatively low as not to overburden the body. By analyzing serum levels of the minerals in Chinese children diagnosed with autism, the researchers found that the autistic children had higher levels of copper and lower levels of zinc than their neurotypical counterparts.

What’s more, the researchers established a zinc/copper ratio common in the autistic subjects of the study that they believe can serve as an important biomarker for further testing in relation to autism. This also reinforces previously reported imbalances in zinc and copper with autism that are linked to metabolic pathways involved with oxidative stress and the binding of metals. While both essential minerals are derived from healthy foods, no dietary recommendations have been made as a result of this study. Further research in these areas is said to be in the works.

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