Why Is It So Difficult To Respond To Individuals And Families In Crisis
Care needs vary widely depending on the situation because of:
· complex 24/7 care delivered in-home or in residential settings
· what clinical stabilization needs are required
· supports varying widely based on age, developmental stage, and family resources
Needs vary widely from a family who requires only respite and minimal home support to someone who may need to be relocated into a stabilization service for treatment. Others may need the expertise of clinicians on specific topics. There often needs to be a coordination of several services to work together to support an individual and those do not come together quickly or efficiently.
We Need Better Strategies To Support Autistic People As The Covid
Liz PellicanoSpectrumProfessor
Listen to this story:
Autistic people have experienced huge disruptions over the past six months. The COVID-19 pandemic has wreaked havoc on all of our lives, but especially so for autistic people, who are often uncomfortable with swift and unexpected change and can struggle with uncertainty about the future. The pandemic has also shuttered or altered the services and supports many autistic people rely on1.
As COVID-19 took hold earlier this year, my team composed of autistic and non-autistic researchers sought to discover what this moment was really like for autistic people and their families. We started talking to them and those who work with and support the autistic community about the COVID-19 lockdown back in March. We reported our findings two weeks ago.
We found that some individuals were surprisingly positive. These optimistic voices highlighted the immense efforts they had witnessed on the part of various programs to ensure flexibility and innovation during the crisis for example, in schools, healthcare systems and social care programs. Some even suggested that these changes were increasing inclusivity for autistic people and their families. For example, moving services online or flipping the clinic, as some colleagues in Sydney called it made for easier access.
Autism And Mental Health
Those of us with autism are more likely to experience mental health problems than the general population. This can be because there are fewer resources and support to help develop coping skills. Also, we can experience more negative life events, face stigma and discrimination from people and services. Its really important that services are able to properly identify mental health problems, so people can get the right support at the right time.
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Great Strengths And Abilities
In general, people with autism are honest and dependable most are focused on their work and are rarely distracted by social activities or outside interests.
Quite a few have exceptional talents in areas such as computer coding, mathematics, music, drafting, organizing, and visual arts. While it can be tough for autistic adults to set up and manage their own space and schedules, many are outstanding bosses and employees.
Some corporations have started to recognize the value of actively recruiting and hiring autistic individuals a few include:
- Freddie Mac
- SAP
Know Ways To Calm An Escalating Situation
- Be on alert for triggers and warning signs.
- Try to reduce stressors by removing distracting elements, going to a less stressful place or providing a calming activity or object.
- Remain calm, as his behavior is likely to trigger emotions in you.
- Be gentle and patient.
- Give him space.
- Provide clear directions and use simple language.
- Focus on returning to a calm, ready state by allowing time in a quiet, relaxation-promoting activity.
- Praise attempts to self-regulate and the use of strategies such as deep breathing.
- Discuss the situation or teach alternate and more appropriate responses once calm has been achieved.
- Debrief with the individual, as well as the team, to prepare for increased awareness of triggers and strategies for self-regulation in future experiences.
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What You Will Get From The Autism Crisis Turnaround:
I just want this to situation to end.
Thats why were going to give you a protocol our 5 Crisis Turnaround Tools designed to end the crisis youre going through.
My child/adult flies off the handle so quickly with no warning. I wish I knew why so I could head it off.
Well show you exactly why. Once you learn to read your child or adults SOS , youll be able to disarm the specific triggers that are setting them off.
Ive got to get out of the cycle of scrambling to put out fires.
Solve the root cause of the crisis rather than trying to stamp out the symptoms.
If only my loved one werent so stressed and anxious!
Apply special techniques to bring your child or adults anxiety levels down
I cant catch my breath. Im always just waiting for the next disaster.
Youre not alone. Be the parent you want to bebut dont always think you can be because of all of the craziness. Well show you how.
Plus, well help you to: Uncover and eliminate the hidden Crisis Intensifiers, create peace in your home, feel more relaxed and well-equipped, and have a wonderful time with your child!
All of the tools provided are also very valuable and well-suited for educators, professionals, schools, and group homes, who deal with crises every day!
Autism Society National Helpline
The Autism Societys National Helpline welcomes your phone calls, emails and letters. Please keep in mind that our helpline does not provide direct services/assistance, such as treatment, legal services, and case management. However, our trained Information & Referral Specialists provide many resources to services and supports across the country.
To better serve you when submitting your inquiry below, please be sure to provide your city, state, and zip code in the description box.
To speak to an I& R Specialist directly, call 800-3-AUTISM .
We also encourage you to contact the Autism Society affiliate in your area, as our affiliates are often the most knowledgeable about local services.
To find an affiliate in your area, .
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Success In Autistic Adults
Some adults with diagnosed autism are moderately to highly successful people. Some are happily married and partnered, and many are fully employed.
Some have even become role models for young adults on the spectrum who hope to live full, independent lives. Just a few such role models include:
- Temple Grandin, animal husbandry expert, author, and public speaker
- Stephen Shore, author, musician, professor, public speaker
- John Elder Robison, author, and public speaker
- Dan Ackroyd, actor, singer, radio personality
- Daryl Hannah, actor
These individuals, in addition to some others, are active autism advocates. Many speak publicly about their experiences and offer resources and insights to autistic adults and their family members.
The Mental Health Needs Of Young Autistic Adults
The Crisis in Mental Health ServicesAutism Research andTreatmentMental Health IssuesImplicationsRecommendations1. Accordingto the U.S. Surgeon General, over the course of a year, approximately 20% ofchildren and adolescents in the U.S. experience signs and symptoms of a mentalhealth problem. Unfortunately, most children and youth who are in need ofmental health services do not actually receive them. Psychological services shouldbe expanded in schools to include a major focus on the delivery of mentalhealth services to all students. 2. Developmentaldisability agencies or agencies supporting individuals with autism spectrumconditions must partner with community mental health agencies to help train,mentor, and build capacity to care for this group across the lifespan. It isimportant to note that many clinicians working within community mental healthagencies already have the skills to effectively deliver this care, but programseither preclude their ability to do so or they lack the confidence to work withthis population.3. Developmentaldisability agencies must reevaluate their inclusion criteria to include personswith autism spectrum conditions, regardless of IQ, and across the lifespan.Organizations must work together, combining expertise in autism fromdevelopmental disability agencies with knowledge and resources from communitymental health agencies.
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Crisis Behavior In Autism Spectrum Disorders: A Self
Lucio Tonello
1LUDES Foundation, Smart City, Malta
2CaLeido Autism Center, Altivole, Italy
3University of Bologna, Bologna, Italy
Abstract
The Autism Spectrum Disorder represents a set of life-long disorders. In particular, subjects with ASD can display momentary behaviors of acute agitation and aggressiveness called crisis behaviors. These events are problematic for the subject and care providers but little is known about their occurrence, namely, possible relations among intensity, frequency, and duration. A group of ASD subjects has been observed for 12 months reporting data on each crisis . Statistical analysis did not find significant results, while the relation between crisis duration and frequency showed a good fit to a power law curve, suggesting the application of Self-Organized Criticality model. The SOC is used to describe natural phenomena as earthquakes, bank failures of rivers, mass extinctions, and other systems where a type of catastrophic events is necessary to maintain a critical equilibrium. In a sense, subjects at risk of crisis behavior seem to fit the same model as seismic zones at risk of earthquakes. The employment of the same strategies, as those successfully developed for known SOC systems, could lead to important insights for ASD management. Moreover, the SOC model offers possible interpretations of crisis behavior dynamics suggesting that they are unpredictable and, in a sense, necessary.
1. Introduction
2. Methods
2.1. Aim of the Study
States Developmental Disability Services Lacking For Autistic Adults And Their Families
In the latest National Autism Indicators Report, researchers from Drexel Universitys A.J. Drexel Autism Institute examined surveys of family members of autistic adults who use Developmental Disability services, and found needs for additional supports like respite care and assistance to plan for crisis and emergencies, especially among families whose adult lived with them.
Data from the surveys showed over one quarter of families with autistic adults who use Developmental Disability services and live with family do not have enough services or supports for themselves, according to the report. And over half of these families indicated a need for respite care to enable them to take a break from caregiving.
Four in 10 families had not discussed preparation for handing crises or emergencies within the previous year at a care team meeting, whether the autistic adult lived with family or apart from family in a group home or other setting. Researchers noted this may have left families ill-equipped to handle illness and unforeseen changes in caregiving needs during the COVID-19 pandemic.
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New Solutions Lab Tackles Urgent Problem
OTTAWA /COMMUNITYWIRE/ A new initiative funded by Canada Mortgage and Housing Corp. aims to better understand the housing crisis facing Autistic adults across Canada and develop solutions to address major gaps between their needs and what the current housing market provides.
Housing through an autism lens: A pathway from crisis to solutions is an 18-month project to identify and address barriers faced by Autistic adults especially in young adulthood and as they enter their senior years in acquiring and maintaining affordable and stable housing that meets their needs.
Long-term housing and independent living are elusive concepts for many Autistic adults, and that has to change, says Pari Johnston, project founder and parent volunteer. The first step is recognizing that there are many vulnerabilities and complex needs. I know from personal experience that innovative, integrated and collaborative housing solutions are required. The current crisis-driven housing support model fails to provide that.
The Housing through an autism lens project will use a social change lab process to explore the problem and develop potential solutions. Social change labs are designed to address complex, sticky problems by including representation from the entire system in question. They are exploratory and evidence-driven in nature. This lab will prototype and test promising ideas as potential solutions to the housing crisis.
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Media Contact:
Helen Murphy
Ners Of Autistic People
Some autistic people will successfully maintain relationships. However, like most relationships, there are challenges.
An adults diagnosis of autism often follows their childs diagnosis of autism or that of another relative. This double whammy can be extremely distressing to the partner who has to cope simultaneously with both diagnoses. Counselling, or joining a support group where they can talk with other people who face the same challenges, can be helpful.
An autistic partner, like any partner, will have strengths and weaknesses when it comes to relationships. A non-autistic partner may find that there are communication breakdowns, such as misunderstandings or finding that your partner is not able to predict your feelings. An autistic partner may need routine, order and time to pursue their hobbies.
Relationship counselling with a counsellor or psychologist experienced at working with autistic people can assist couples to develop strategies and to communicate more effectively with each other.
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Barriers To Community Participation
Although many families reported their loved one participated in activities in the community, only one-third had any type of paid daytime activities. About 40% of adults who lived with family, and 60% of those who lived apart from family, were engaged in facility-based work in settings that did not include people without disabilities. Hispanic autistic adults were less likely to participate in community-based activities or to have paid work compared to those who were non-Hispanic white, Black or other/mixed race.
About one in every three families felt like their adult did not have enough support to be able to work or volunteer in the community. Despite this, families reported high levels of satisfaction with the supports and services their adult received, Roux said. At the same time families reported barriers to community participation including stigma in the community or not having adequate staffing to support the adult to do activities in the community.
The report is a snapshot of a segment of autistic adults who are receiving services. The researchers know there is likely a sizable population of adults with autism who dont receive Developmental Disability services and really need them.
What Can You Do Now
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National Autism Indicators Report: High Rates Of Mental Health Conditions And Persistent Disparities In Care
Mental health is an important part of whole-person health and wellbeing and is a key component of community health. But it is an often-overlooked part of health care. A recent report from the A.J. Drexel Autism Institute at Drexel University highlights the importance of mental health care in autistic children and adults. The report, the latest in the National Autism Indicators Report series, found high rates of mental health conditions in autistic children and adults and persistent disparities in mental health and health care by race and ethnicity.
National estimates, based on parental reporting, suggest that three-quarters of autistic children have at least one co-occurring mental health condition, including behavior or conduct problems, ADHD, anxiety and depression. And nearly half have at least two. This is much greater than other children with special health care needs, where half have at least one mental health condition and about one-quarter have two or more.
The findings of the previous report raised some important questions and led us to further examine the role of mental health and mental health care in autistic people, said Jessica Rast, research associate in the Autism Institute and lead author of the report.
Are You In Need Of Support
To find support in your area, contact your local Mind. Ambitious About Autism have information about making the most out of your visit to a psychiatrist. National Autistic Society have a directory of support for people with autism and mental health problems.Counselling Directory can help you find a therapist with experience working with people with autism. These counsellors would be paid for.Please see our page on finding a therapist to consider which option is right for you.
“I have experienced services that treat mental health and autism as completely separate issues and both services seem fearful of people with the other condition.”
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What Constitutes A Crisis
A crisis has different meanings for different people because it is a subjective experience. What constitutes a crisis will depend on the persons or peoples perception of the incident, setting, or circumstances. The ASD research literature shows that 80 -95% of families report experiencing a crisis.
Events or situations that bring on a crisis and cause family or support staff to call emergency services are due to challenging behavior that exceeds their ability to safely assist the individual with ASD to remain behaviorally stable. The problem is that emergency service providers require a high degree of understanding and experience with ASD in order to provide the right response and recommendation of services. This is where families get tied up because those required multiple services do not come together quickly.
Turning 22 With Autism
The relative lack of information for and about adults on the spectrum means that many parents or guardians suddenly find themselves scrambling when their childnow a young adultreaches the magical age of 22.
That’s because, on their 22nd birthday, people with autism suddenly lose their entitlement to services under the Individuals with Disabilities Education Act and enter the much chancier world of adult services.
While the IDEA requires schools to offer “free and appropriate education” to all children, there is no such requirement for adults. As a result, funding and programming for adults may or may not be available at any given time.
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