UNIT 6 CH 1 – Where to Look for Resources?
CHAPTER 1 – NETWORKING & SUPPORT
INTRODUCTION
NETWORKING
a. Autism CARES Act of 2019
b. Government Websites
SUPPORT
APPENDIX A – Autism Network (AANE)
UNIT 6 CH 2 – Where to Look for Resources?
CHAPTER 2 – INSURANCE & INTERVENTION
INTRODUCTION
UNIT 6 CH 3 – Where to Look for Resources?
CHAPTER 3 – LAWS ~ FEDERAL, STATE, & LOCAL
INTRODUCTION
a. IEP
b. AUTISM EDUCATION & ANTI-BULLYING POLICIES
UNIT 6 CH 4 – Where to Look for Resources?
CHAPTER 4 – FUTURE CHALLENGES
INTRODUCTION
a. 40 Something
b. Geriatrics (Resources & get on ‘waiting lists’, Finances. Individual’s Insurance, Health Care, Colleges, Adult Day Care, Adult Group Homes, Assisted Living, Nursing Facilities, Hospice/Palliative.)
PLEASE READ DISCLAIMER
CHAPTER 1 – NETWORKING & SUPPORT
INTRODUCTION
NETWORKING
a. Autism CARES Act of 2019
b. Government Websites
SUPPORT
APPENDIX A – Autism Network (AANE)
UNIT 6 CH 2 – Where to Look for Resources?
CHAPTER 2 – INSURANCE & INTERVENTION
INTRODUCTION
UNIT 6 CH 3 – Where to Look for Resources?
CHAPTER 3 – LAWS ~ FEDERAL, STATE, & LOCAL
INTRODUCTION
a. IEP
b. AUTISM EDUCATION & ANTI-BULLYING POLICIES
UNIT 6 CH 4 – Where to Look for Resources?
CHAPTER 4 – FUTURE CHALLENGES
INTRODUCTION
a. 40 Something
b. Geriatrics (Resources & get on ‘waiting lists’, Finances. Individual’s Insurance, Health Care, Colleges, Adult Day Care, Adult Group Homes, Assisted Living, Nursing Facilities, Hospice/Palliative.)
PLEASE READ DISCLAIMER
CHAPTER 1 NETWORKING & SUPPORT –
INTRODUCTION
When searching for networking and support, autism families may need to prepare to tackle another ‘learning curve’. Using technology to the fullest can help. The first step is understanding why networking and support can become critical. Personal stories make that point.
Hinds, M. (2014) says that we had no one to give us respite for Ryan. There was no way Ryan could be left with a babysitter. No one could handle him. Every once in a while, we would try, but Ryan screamed inconsolable the entire time we were gone. We had officially joined Ryan and were stranded on Autism Island!
Some further illustrations here may be helpful in knowing the laws which provide Networking and Support assistance. Sometimes these provisions seem intertwined as families find services. Such as – autism specialists, clinicians, providers and professionals, programs; as well as schools, insurance coverage, information sources, social networks and support groups.
NETWORKING
Wang, L., Mandell, D., et al. (2013) explored a study which compared the costs of healthcare and services for those with Autism Spectrum Disorder. The comparison was between Medicaid and private insurance providers as they affect the cost of healthcare to this population. They say that, as opposed to other disorders, the traditionally high cost and long-term need for lifetime ‘autism’ services result in coverage inadequacies. The implication is that private insurance companies are more than happy to have Medicaid handle the autism population.
Siri, K. (2015) says to also remember once your child has an official diagnosis they are entitled to Medicaid, which has its own pros and cons. If either parent is a veteran, there may be VA benefits or services available. Check online for biomedical treatment options covered by TRICARE (Military entity). Also check on Supplements, Respite Care and other programs like Specialized Training Of Military Parents (STOMP) and Autism Salutes (also military).
Note: More about Insurance in UNIT 6 Chapter 2.
Keep track of medical expenses for tax season and know the name of the “Commissioner of Insurance” for your state, should you find resistance from your insurance plan.
Meanwhile, you are most likely entitled to Medicaid and a Handicapped Parking sticker for easier access to buildings providing services for your child. The Department of Motor Vehicles (DMV) has paperwork to be filled out by your physician.
< My Thoughts > “…Handicapped Parking sticker…”
How many times has our Handicapped Parking sticker saved us time, money, and millions of steps into and out of buildings and far away areas? Sometimes it’s the little things which are a ‘big’ help.
Siri, K. (2010) also wants you to know that while there is some help from the government (for medical bills), most notably Medicaid, there is not nearly enough. Your child may qualify for Supplemental Security Income (SSI). You will likely dip into, if not drain, your savings, especially if you pursue ‘alternative’ therapies.
< My Thoughts > “…there is not nearly enough.”
As a parent and an educator, there have been so many stories of people selling their homes in order to provide necessary services for their child. Before you do this, please get financial advice and/or counseling for your particular situation. Caveat – you may need to move to a neighboring county or state where there are better school programs and services for your family.
Siri continues – Check all insurance policies of both parents. Which one will provide your child with more coverage? This may also help you decide which parent may have to reduce or rearrange their work schedule, or even change jobs to meet the needs of your child’s many appointments and therapies.
a. Autism CARES Act of 2019 –
The Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2019 reauthorizes and expands the provisions first introduced in the Combating Autism Act of 2006. The Autism CARES Act ensures support for research, services, prevalence tracking, and other government activities. The new legislation increases the annual budget on autism efforts through 2024. New provisions expand the focus of government activities to include the entire lifespan of people on the autism spectrum and require a report on health and well-being. This 2019 legislation also reauthorizes and expands the Interagency Autism Coordinating Committee (IACC).
Golberstein & Gonzales (2015) shared principal findings of Medicaid expansions significantly increasing health insurance coverage, thus reducing out-of-pocket spending for mental health services, including Autism. But they caution – Medicaid eligibility by itself does not necessarily increase mental health services; there are still barriers to ‘mental health’ services. And, that Medicaid expansions may simply mean that persons are transferred from private health insurance to Medicaid.
< My Thoughts > “…mental health services …”
Having laws in place and provisions to access when the unexpected happens is necessary, but when there is no immediate answer available as tragedy strikes, then you may have to become creative.
Sonny suddenly went into a behavioral ‘crisis’ and we had to have immediate help. We called Emergency Services and they transported him to the nearest hospital. He was admitted for a behavioral evaluation. Funding for his hospital stay came from a’21-Day Mental Health Evaluation’ coverage, available under a more ‘heavily managed’ medical care insurance policy provision.
If you have Medicaid, you get FREE evaluations. Check with your state websites to see if your family is eligible for Medicaid and Children’s Health Insurance Program (CHIP) which provide health coverage to nearly 60 million Americans, including children, pregnant women, parents, seniors and individuals with disabilities. There is also the Affordable Care Act of 2010, which expanded Medicaid eligibility in 2014.
There are ‘Networking for Resources’ in your area, try searching online. This is some of what you may find, in alphabetical order –
There are many more listings of Autism Organizations, statewide and nationwide. Look for the resources with the most available and complete assistance before you overextend yourself and your family. Exhaust all ‘free’ and available sources first.”
< My Thoughts > “Exhaust all ‘free’ and available sources first.”
See what may be possibly be free from your city, state, county, military, and government services. Also, consider looking at other members of your immediate and extended family to see what monies are out there. Thus, bringing more funds into the household. For example, a military spouse can be paid to care for, manage medications, and take their loved one to therapies and medical appointments.
Check ALL of your family INSURANCE policies for evidence of any restrictions of coverage, benefits, & limitations; deductible, co-pay, co-insurance, and network of accepted providers, in each policy.
< My Thoughts > “…look for… benefits…”
b. GOVERNMENT WEBSITES
Here are websites you may find by searching for: Apply for Financial Resources/benefits & Research Programs for the U.S. Government –
INTRODUCTION
When searching for networking and support, autism families may need to prepare to tackle another ‘learning curve’. Using technology to the fullest can help. The first step is understanding why networking and support can become critical. Personal stories make that point.
Hinds, M. (2014) says that we had no one to give us respite for Ryan. There was no way Ryan could be left with a babysitter. No one could handle him. Every once in a while, we would try, but Ryan screamed inconsolable the entire time we were gone. We had officially joined Ryan and were stranded on Autism Island!
Some further illustrations here may be helpful in knowing the laws which provide Networking and Support assistance. Sometimes these provisions seem intertwined as families find services. Such as – autism specialists, clinicians, providers and professionals, programs; as well as schools, insurance coverage, information sources, social networks and support groups.
NETWORKING
Wang, L., Mandell, D., et al. (2013) explored a study which compared the costs of healthcare and services for those with Autism Spectrum Disorder. The comparison was between Medicaid and private insurance providers as they affect the cost of healthcare to this population. They say that, as opposed to other disorders, the traditionally high cost and long-term need for lifetime ‘autism’ services result in coverage inadequacies. The implication is that private insurance companies are more than happy to have Medicaid handle the autism population.
Siri, K. (2015) says to also remember once your child has an official diagnosis they are entitled to Medicaid, which has its own pros and cons. If either parent is a veteran, there may be VA benefits or services available. Check online for biomedical treatment options covered by TRICARE (Military entity). Also check on Supplements, Respite Care and other programs like Specialized Training Of Military Parents (STOMP) and Autism Salutes (also military).
Note: More about Insurance in UNIT 6 Chapter 2.
Keep track of medical expenses for tax season and know the name of the “Commissioner of Insurance” for your state, should you find resistance from your insurance plan.
Meanwhile, you are most likely entitled to Medicaid and a Handicapped Parking sticker for easier access to buildings providing services for your child. The Department of Motor Vehicles (DMV) has paperwork to be filled out by your physician.
< My Thoughts > “…Handicapped Parking sticker…”
How many times has our Handicapped Parking sticker saved us time, money, and millions of steps into and out of buildings and far away areas? Sometimes it’s the little things which are a ‘big’ help.
Siri, K. (2010) also wants you to know that while there is some help from the government (for medical bills), most notably Medicaid, there is not nearly enough. Your child may qualify for Supplemental Security Income (SSI). You will likely dip into, if not drain, your savings, especially if you pursue ‘alternative’ therapies.
< My Thoughts > “…there is not nearly enough.”
As a parent and an educator, there have been so many stories of people selling their homes in order to provide necessary services for their child. Before you do this, please get financial advice and/or counseling for your particular situation. Caveat – you may need to move to a neighboring county or state where there are better school programs and services for your family.
Siri continues – Check all insurance policies of both parents. Which one will provide your child with more coverage? This may also help you decide which parent may have to reduce or rearrange their work schedule, or even change jobs to meet the needs of your child’s many appointments and therapies.
a. Autism CARES Act of 2019 –
The Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2019 reauthorizes and expands the provisions first introduced in the Combating Autism Act of 2006. The Autism CARES Act ensures support for research, services, prevalence tracking, and other government activities. The new legislation increases the annual budget on autism efforts through 2024. New provisions expand the focus of government activities to include the entire lifespan of people on the autism spectrum and require a report on health and well-being. This 2019 legislation also reauthorizes and expands the Interagency Autism Coordinating Committee (IACC).
Golberstein & Gonzales (2015) shared principal findings of Medicaid expansions significantly increasing health insurance coverage, thus reducing out-of-pocket spending for mental health services, including Autism. But they caution – Medicaid eligibility by itself does not necessarily increase mental health services; there are still barriers to ‘mental health’ services. And, that Medicaid expansions may simply mean that persons are transferred from private health insurance to Medicaid.
< My Thoughts > “…mental health services …”
Having laws in place and provisions to access when the unexpected happens is necessary, but when there is no immediate answer available as tragedy strikes, then you may have to become creative.
Sonny suddenly went into a behavioral ‘crisis’ and we had to have immediate help. We called Emergency Services and they transported him to the nearest hospital. He was admitted for a behavioral evaluation. Funding for his hospital stay came from a’21-Day Mental Health Evaluation’ coverage, available under a more ‘heavily managed’ medical care insurance policy provision.
If you have Medicaid, you get FREE evaluations. Check with your state websites to see if your family is eligible for Medicaid and Children’s Health Insurance Program (CHIP) which provide health coverage to nearly 60 million Americans, including children, pregnant women, parents, seniors and individuals with disabilities. There is also the Affordable Care Act of 2010, which expanded Medicaid eligibility in 2014.
There are ‘Networking for Resources’ in your area, try searching online. This is some of what you may find, in alphabetical order –
- Autism Diagnosis Specialists
- Autism Support Groups
- Colleges and Hospitals with Autism programs
- Community Autism Programs
- Community Autism Service Providers
- Easter Seals Autism Program & Phone list
- Parent’s Guide to Autism
- Physicians specializing in Autism
- Respite Care for Autism
- Schools with Autism Programs
- Therapists Specializing in Autism
There are many more listings of Autism Organizations, statewide and nationwide. Look for the resources with the most available and complete assistance before you overextend yourself and your family. Exhaust all ‘free’ and available sources first.”
< My Thoughts > “Exhaust all ‘free’ and available sources first.”
See what may be possibly be free from your city, state, county, military, and government services. Also, consider looking at other members of your immediate and extended family to see what monies are out there. Thus, bringing more funds into the household. For example, a military spouse can be paid to care for, manage medications, and take their loved one to therapies and medical appointments.
Check ALL of your family INSURANCE policies for evidence of any restrictions of coverage, benefits, & limitations; deductible, co-pay, co-insurance, and network of accepted providers, in each policy.
< My Thoughts > “…look for… benefits…”
- Drug coverage
- Urgent care
- Primary care
- Dental/Vision
- Lab Services
- Medical Equipment (if needed)
- Surgery (including ‘outpatient’ surgery centers)
- Chiropractor
- Home Health Care (including ‘respite’ services).
- Therapists – Speech, Occupational, other Interventions
b. GOVERNMENT WEBSITES
Here are websites you may find by searching for: Apply for Financial Resources/benefits & Research Programs for the U.S. Government –
Federal Old Age, Survivors and Disability Insurance Benefits - a Federal Social Security cash benefit available to someone who has contributed to the social security fund and becomes disabled. Spouses and dependent children are also eligible for benefits if the primary beneficiary becomes disabled, retires (Age 62 or 60 if widowed), or dies. Recipients of this benefit also receive Medicare. Contact your local Social Security Offices for more information.
Supplemental Security Income (SSI) - a Federal Social Security cash benefit available to the disabled who show financial need. A parent's (single or married) income is used to determine eligibility for all applicants, under the age of 18. Recipients of this benefit also receive Medicaid (plus other benefits). Contact your local Social Security Office to apply.
Special Needs Trust/Supplemental Needs Trust - A trust where the resources are not considered in determining eligibility for government benefits (551, Medicaid). Money in this trust can be used to supplement or augment services that Medicaid does not cover (e.g. vacations or extra therapies). Families should contact an attorney with experience in estate planning and developmental disabilities to set up such a trust.
Family Reimbursement Programs - Reimbursement for services not covered under other means such as Medicaid. Services reimbursed may include respite, camps, educational materials, therapies, etc. Contact the Developmental Disabilities Council in your state for more information.
Access A Service Coordinator/Case Manager - Families should begin their quest for resources by obtaining a Service Coordinator, otherwise known as a Case Manager. This is an individual who assesses a family's needs and links them to available services and resources. They can help with filling out paperwork and making phone calls to agencies. Sources of funding for this service can come through Medicaid as well as Early Intervention and State Developmental Disabilities Offices.
Caregiver Program Assistance – Caregiver Eligibility Check – Are you interested in applying for VA’s Comprehensive Assistance for Family Caregivers Program? Answer a few questions to find out if you meet the criteria for VA’s new program for certain Veterans needing the assistance of a caregiver. Based on your answers to the questions, you will be guided to complete the appropriate online application for VA benefits.
Retrieved online from –https://va.gov/healthbenefits/resources/Caregiver_Eligibility_Check.asp
< My Thoughts > “…eligibility…”
Please, before you reject the idea of exploring a resource because you don’t see how you could be ‘eligible’, consider exploring a government eligibility list first. And, if you need to send for personal documents or do extensive family research, it just may be worth it. A parent found that her disabled child qualified for funds to do expensive dental work, because of her ancestral Native American heritage. Veterans and civil servants have many untapped resources, as do certain ethnic and/or age groups.
There may be a monthly dividend or a caregiver stipend waiting for you through various resources granted to families with a ‘disabled’ member. Also, asking to be assigned a state Case Manager (usually a social worker) can be vital. This person has a vast knowledge of state and federal programs, services and funds available to qualifying families. Also, if you apply for something and are told you don’t qualify, then ask for a written denial, plus the ‘exact’ reason for being rejected.
Federal Old Age, Survivors and Disability Insurance Benefits - a Federal Social Security cash benefit available to someone who has contributed to the social security fund and becomes disabled. Spouses and dependent children are also eligible for benefits if the primary beneficiary becomes disabled, retires (Age 62 or 60 if widowed), or dies. Recipients of this benefit also receive Medicare. Contact your local Social Security Offices for more information.
Supplemental Security Income (SSI) - a Federal Social Security cash benefit available to the disabled who show financial need. A parent's (single or married) income is used to determine eligibility for all applicants, under the age of 18. Recipients of this benefit also receive Medicaid (plus other benefits). Contact your local Social Security Office to apply.
Special Needs Trust/Supplemental Needs Trust - A trust where the resources are not considered in determining eligibility for government benefits (551, Medicaid). Money in this trust can be used to supplement or augment services that Medicaid does not cover (e.g. vacations or extra therapies). Families should contact an attorney with experience in estate planning and developmental disabilities to set up such a trust.
Family Reimbursement Programs - Reimbursement for services not covered under other means such as Medicaid. Services reimbursed may include respite, camps, educational materials, therapies, etc. Contact the Developmental Disabilities Council in your state for more information.
Access A Service Coordinator/Case Manager - Families should begin their quest for resources by obtaining a Service Coordinator, otherwise known as a Case Manager. This is an individual who assesses a family's needs and links them to available services and resources. They can help with filling out paperwork and making phone calls to agencies. Sources of funding for this service can come through Medicaid as well as Early Intervention and State Developmental Disabilities Offices.
Caregiver Program Assistance – Caregiver Eligibility Check – Are you interested in applying for VA’s Comprehensive Assistance for Family Caregivers Program? Answer a few questions to find out if you meet the criteria for VA’s new program for certain Veterans needing the assistance of a caregiver. Based on your answers to the questions, you will be guided to complete the appropriate online application for VA benefits.
Retrieved online from –https://va.gov/healthbenefits/resources/Caregiver_Eligibility_Check.asp
< My Thoughts > “…eligibility…”
Please, before you reject the idea of exploring a resource because you don’t see how you could be ‘eligible’, consider exploring a government eligibility list first. And, if you need to send for personal documents or do extensive family research, it just may be worth it. A parent found that her disabled child qualified for funds to do expensive dental work, because of her ancestral Native American heritage. Veterans and civil servants have many untapped resources, as do certain ethnic and/or age groups.
There may be a monthly dividend or a caregiver stipend waiting for you through various resources granted to families with a ‘disabled’ member. Also, asking to be assigned a state Case Manager (usually a social worker) can be vital. This person has a vast knowledge of state and federal programs, services and funds available to qualifying families. Also, if you apply for something and are told you don’t qualify, then ask for a written denial, plus the ‘exact’ reason for being rejected.
SUPPORT
Seeking support, by networking through social media for online and in-person parent support groups, can bring help to families of children with autism. Fight the ‘isolation’ enemy. Support can come from reaching out to others without autism in their life. Or, for a brief time, each week, focus on pursuing your favorite passion, or volunteering in the community.
Ambersley, K. (2013) knows time is of the essence, and there is never enough of it, especially in the early years of autism diagnosis.
Sometimes, I get to the point where I have to convince myself that it’s OK to be frustrated; then I can get over the frustration and move forward. It’s really important to take some time out with each other as parents, to recharge and energize.
My recommendation for parents and caregivers would be to find an organization which provides ‘respite care’. Searching on the internet under ‘respite care’ will direct you to some good resources in your local and surrounding communities. Going out for a quiet dinner or a long drive prevents us from getting sucked into the daily grind; helps us to change focus, and celebrate togetherness.
< My Thoughts > “…find an organization which provides ‘respite care’.”
Respite care, even for a short period of time, helps everyone involved. This will give you time to reflect and support one another. Finding someone for respite care can be thought of as ‘coaching’ a trusted person or two; to take care of your child; to be there for you when you need them. The first time you leave your child, make it for a very short period of time; without mealtimes or medication times involved. You are gone briefly, then you are back. And, you have been within reach the whole time. Next time you leave, extend the time to include a meal. Gradually extend the times to include meals, meds, bath time and bedtime; giving everyone time to adjust.
The first time we left Sonny with someone for respite care, we had planned to go to lunch at a nearby restaurant, but ended up grabbing a sandwich and sitting in the neighborhood park within sight of our house. With my husband staring at his watch the whole time, and me staring at my phone, or at our house.
This was a learning experience for us. We even created a ‘Visual Schedule’ to cover the whole day. I won’t fill you with any illusions, by the time you get everything ready, and the ‘respite carer’ arrives, you are exhausted, fearful, and want to call the whole thing off. See it through though, it will become easier and you will be glad you did.
Damon, L. (2012) demands of prospective caregivers – How well do you know my daughter? What assistance does Carrie need? Is she a runner? What do you do if she tries to elope? You don’t speak her language so, how will you know what she wants? Do you know what makes her afraid, or how to soothe her when she gets overwhelmed by your world? Do you know if she can use the bathroom? What assistance does she need? I’m Carrie’s mother and I barely have these things under control. But I do know the activities she likes to do and what triggers her to lose control.
< My Thoughts > “…I’m Carrie’s mother…”
There are so many issues to consider when asking someone to cover for you for even a brief respite period. Because of the everchanging nature of autism, even extended family members may find it difficult to step into a parent’s shoes for even an hour or two.
Note: More about ‘respite care’ in UNIT 6, Chapter 5; and ‘Visual Schedules’ in UNIT 3, #3 Social & Daily Living Skills.
Shepherd, D., Goedeke, S., et al. (2020) say that their study stresses that “ASD-related interventions are predominately implemented within the home and, what is more, they are not curative but more ‘palliative’ in nature.”
< My Thoughts > “…‘palliative’ in nature.”
Supports are not ‘curative’ but ‘palliative’ in nature, seems to mean here that the healthcare planning is more for a person with an ongoing complex illness or disorder, not able to be ‘cured’. Doing whatever it takes to keep the aging individual with autism functioning as independently as possible when treatment is no longer effective.
The Shepherd, D., Goedeke, S., et al. (2020) New Zealand study substantiates the body of evidence predicting that as a child grows older, unwanted behaviors become more challenging. Also, creating more parental stress and causing a critical need for both ‘formal’ and ‘informal’ support. Government therapy provided and private-pay with government-stipend therapy, respectively.
Most therapy takes place in the home, not dropping your child off at a therapists’ office or clinic. The government has seemingly close control over nine agencies to oversee services for the population on the Autism Disorder Spectrum.
This includes the following –
According to Cole, L., Kharwa, Y., et al. (2017), networking through Social Media for parents of children with autism has eight emerging ‘support’ themes. They claim the following are most important for parents –
Networking through social media was reported as a way to provide ongoing support for parents, caregivers, and even for clinical practitioners. Yes, several groups were said to have clinicians and network providers as a part of their online group meetings.
< My Thoughts > “…ongoing support...”
So many things are encouraging here, for instance the interest of clinicians who joined in to support the ‘critical issue’ discussions. Alarmingly, many family members care for the child with autism who can’t or won’t communicate, who can’t or won’t eat, who can’t function or thrive behaviorally. And, there are so many other situations needing ongoing support. Online meetings can provide a way to find that support; plus, many online groups provide retrievable meeting archives to search.
The first emerging theme which Cole, L., Kharwa, Y., et al. (2017) considered in the ‘support through media’ study was the ‘Communication’ support given; followed by Behavioral, Feeding, Emotional, Informational, Professional, Positive, and Limited –
Communication support is needed for delayed speech and language development; for variability, delay and/or regression in language growth. Also, for help with scripted speech, echolalia, expressive and receptive speech.
Behavioral support for restrictive, repetitive, and/or stereotypical ASD behavior. Mild to severe behavioral problems such as – attacking others, tantrums, meltdowns, plus other outbursts of behavior endangering self and others.
Feeding support was received, regarding how a child may have sensory issues leading to avoiding foods of a certain color, smell, texture, or shape. Also, information about eating routines, feeding difficulties, obsessive eating patterns, inappropriate eating behaviors, and introduce new foods.
Emotional support was provided and seemed to be a core function of this process. Sharing of information, companionship, acceptance, optimism, and the use of a social media App (‘WhatsApp’ social app) to create awareness. Participants in stimulating group discussions found that they were not alone.
Informational support for treating common childhood sicknesses, use of medication, and continuing suggestions of healthcare professionals. They also enjoyed information about social life, such as experiencing swimming and horseback-riding outings. They found these outings somewhat freeing them from a very isolated life. Because, they stated, “hardly anyone comes to their home to visit, anymore.”
Professional support from the presence of a health professional listening, but not necessarily leading the group. They may be making a variety of contributions, validating information and talking about priorities. Plus, helping with discussions of uncertainties and giving suggestions not recommendations.
Positive support in group experiences. Participants say that someone is always coming up with solutions or ideas which give members the opportunity to know and understand something they haven’t experienced before. Face-to-face meetings are available one-on-one, with the use of the ‘WhatsApp’ social online application.
Limits to support are concerning. Sometimes participants felt that time was spent on a subject which only applied to a very few. Or, support suggestions were not always practical, appropriate, or wanted. Others made it known that every once in a while, they felt that they were missing out on the normal world when they were reduced to only sharing in a support group. Many times, there were sessions of confrontation instead of comfort.
The study emphasizes that the group does not provide actual therapy, although one or more in the group present may be therapists or clinicians. But members have an opportunity to release negative emotions, and share common experiences. Support groups strive to provide followers with ways to create awareness, gain information, and increase knowledge. Hopefully, by networking through social media, participants will find they are receiving a better understanding of autism, and a greater sense of emotional support.
< My Thoughts > “Support groups…”
Studies show that parents seek out support groups for very different reasons. There are those who are looking for ways to cope with the ‘autism’ news. Others, who are seeking information, resources, and strategies to help them make connections, take action, and ways to move on. Most parents who joined online support or interest groups, stated that it was helpful, overall. But that sometimes you have to ‘shop around’ to find what fits your needs, because there are groups taking a one-size-fits-all approach.
Many parents want to find a support or interest group in their area or location. Others find a group that they can identify with, such as parents with an older child or adult who has just been diagnosed. Some parents are looking for ways to deal with their anxiety, depression, or seeking an overall sense of well-being for themselves. There are parents who are trying to find other ‘single’ parents, or parents who are on the spectrum themselves. Often parents look for a group whose participants have several children on the spectrum; or those with a large family, but only one child on the spectrum. So, the need to ‘shop around’ is very understandable, but shouldn’t be discouraging.
Bonker, E. M. & Breen, V. G. (2011) say, “Some of my closest friends are relentless autism moms whom I have never met face-to-face. We have met on the internet, creating our own virtual network of support. I know that I can contact them at any hour with some panicked question and they will send it out on our network to get the answer. Mostly, we talk about poop. Healthy poop is a holy grail in autismland. Enough said.”
< My Thoughts > “…relentless autism moms whom I have never met face-to-face.
“We have met on the internet, creating our own virtual network of support.” There are days when this must mean everything.
Clifford, T. & Minnes, P. (2013) researched a support group made up primarily of parents of children with autism, who came from Canada and the United States. They determined that joining an online support group was “useful in making the participating parents feel less alone and greatly increased their knowledge of resources.” Parents reported that attending ‘group’ online was empowering, giving them greater feelings of acceptance towards their child, and towards having a child with ASD.
One parent said that being able to provide assistance to another group member helped her in return. Another parent felt that after hearing others’ solutions, she was now better able to deal with her child’s behavior problems. Still other parents emphasized the value of learning with others about how to cope with their stress. Some stated that they were learning better ways to advocate for their child.
While there were those who felt that having more of an agenda or topic schedule would improve the discussions. Also, as one parent mentioned, it would be advantageous to have a long-term measured response to popular intervention programs. Others wanted to have more experienced parents of older children with ASD participating in their support group. There is so much information out there and so many like-minds online to have discussions with; it may be worth parents time to search them out. Isolation is the enemy of families with autism.
< My Thoughts > “Isolation is the enemy of families with autism.”
So many reasons to isolate, to keep your child, your family, and yourself safe from community exposure. My own experience with a disabled child goes far beyond staying home because of a bad hair day. Even my naturally ‘social self’, as a mom, a wife, a teacher, and a community member, can feel the raw exposure in taking my son from the safety of our home. Of course, eventually necessity forces us to step out that front door.
Senator, S. (2011) No one has a perfect life! Autism was not all of what Nat was. Autism parents must cope with the negative perceptions and stereotypes and seek ways to be happier and find that happiness with their children and on their own.
In her book, Susan tells how different parents found a degree of happiness and their “peace of mind” in novel ways.
Nancy Bea focuses on fine-tuning Henry’s medication and his educational program, through the use of visuals and a highly organized schedule.
Kim says her kids love amusement parks with carousels; they love to spin. We never let autism trap us in our home.
For Cathy, an ‘au pair’ solution was a godsend. Of course, not everyone can afford that, but perhaps you can find a local college student, guy or gal, to board with you, exchanging the price of rent for childcare. (Maybe even someone who is studying child psychology, or is in a teacher education program.)
For some it’s belly dancing, for others, it’s continuing with hobbies they love (painting, cartooning, & doodling). There are those who write poetry, join favorite competitions, and find escape for a while.
Rebecca and Beth enjoy scrapbooking, alone, creating, recharging. Then later sharing the creation with the family who loves seeing what they’ve done with their pictures.
Alastair has built a nursery with a huge collection of bonsai trees. His wife gave up smoking and began running marathons.
Bonnie says, “she’s become so into raising and caring for Beta fish that my family has threatened intervention.”
Eileen discovered motorcycling as her way of coping and creating balance. “It is so much fun to play dress up, put on my leathers and my biggest earrings, and go for a ride along the ocean.”
Susan reminded me that spiritual grounding can be an important aspect of self-care. “So, I go to yoga class and to Zen meditation.”
Amy feels like she’s accomplished something when after working out, she feels sweat pouring down her face. “I have burned four hundred calories with exhausting exercise. I’m revitalized by a hot shower and renewed spirit.”
< My Thoughts > “…a degree of happiness and their “peace of mind…”
Seeking ways to support yourself can become a creative and inspirational thing in itself. For me, it’s Tai Chi!
Senator, S. (2006) sums it up by saying that doing research occupied her fully and gave her a sense of purpose. As for my husband Ned, she continues, the information I had dug up gave him some peace, at last. I began to feel more peace of mind, too, as I understood better what we were dealing with and what I would have to do to help our son, Nat.
My next step was to locate other people like me. I called the local branch of the Department of Mental Retardation, which ran an autism support group at a nearby office. My first night at the autism support group, felt to me like coming home.
I should have trusted my gut to push harder, sooner. Because of the delay in diagnosing Nat, he had missed out on at least a year of potentially helpful therapies. I found strength and relief being with people who had been wounded like me, who had lost the dream of perfect children, who understood how harsh this world can be. I told my husband Ned about the meeting, but going to support groups was NOT his thing.
Senator reminisces about families, close friends, and certain of Nat’s teachers who all became part of what we called his ‘cult’, people who believe that he is capable of much more, because that’s what they want to believe. Nat’s cult has been our lifeline.
About friends, Jones, R. (2013) tells us, “I am who I am and I don’t hate being Autistic but it can be really hard to deal with the parts of autism that make it really hard for me to connect with other people.”
“For me, the hardest thing about living Autistic is how much distance it puts between me and others, because of my sensory sensitivities. It’s hard for me to go out in the world all day, every day, because the world is filled with bright lights, high-pitched sounds, bright colors, fast movement. The world is exhausting!”
Sicile-Kira, C. (2014) says – Persons with ASD may have a hard time making sense of their world. Sameness in certain areas provides a predictability and the security missing from an existence that they are having a hard time comprehending.
Clifford, T. & Minnes, P. (2013) recall a study which found that parents participating in support groups experience less stress and feel more positive about meeting their children’s needs. Needs such as, accessibly of transportation, much needed childcare, sharing similar experiences, or finding methods of coping, and solutions in correlation with religious beliefs. Whether parents were referred, found groups by reaching out on social media, or searched out for a support group on their own, participants of this study felt that the overall experience seemed to be well worth their time.
Seeking support, by networking through social media for online and in-person parent support groups, can bring help to families of children with autism. Fight the ‘isolation’ enemy. Support can come from reaching out to others without autism in their life. Or, for a brief time, each week, focus on pursuing your favorite passion, or volunteering in the community.
Ambersley, K. (2013) knows time is of the essence, and there is never enough of it, especially in the early years of autism diagnosis.
Sometimes, I get to the point where I have to convince myself that it’s OK to be frustrated; then I can get over the frustration and move forward. It’s really important to take some time out with each other as parents, to recharge and energize.
My recommendation for parents and caregivers would be to find an organization which provides ‘respite care’. Searching on the internet under ‘respite care’ will direct you to some good resources in your local and surrounding communities. Going out for a quiet dinner or a long drive prevents us from getting sucked into the daily grind; helps us to change focus, and celebrate togetherness.
< My Thoughts > “…find an organization which provides ‘respite care’.”
Respite care, even for a short period of time, helps everyone involved. This will give you time to reflect and support one another. Finding someone for respite care can be thought of as ‘coaching’ a trusted person or two; to take care of your child; to be there for you when you need them. The first time you leave your child, make it for a very short period of time; without mealtimes or medication times involved. You are gone briefly, then you are back. And, you have been within reach the whole time. Next time you leave, extend the time to include a meal. Gradually extend the times to include meals, meds, bath time and bedtime; giving everyone time to adjust.
The first time we left Sonny with someone for respite care, we had planned to go to lunch at a nearby restaurant, but ended up grabbing a sandwich and sitting in the neighborhood park within sight of our house. With my husband staring at his watch the whole time, and me staring at my phone, or at our house.
This was a learning experience for us. We even created a ‘Visual Schedule’ to cover the whole day. I won’t fill you with any illusions, by the time you get everything ready, and the ‘respite carer’ arrives, you are exhausted, fearful, and want to call the whole thing off. See it through though, it will become easier and you will be glad you did.
Damon, L. (2012) demands of prospective caregivers – How well do you know my daughter? What assistance does Carrie need? Is she a runner? What do you do if she tries to elope? You don’t speak her language so, how will you know what she wants? Do you know what makes her afraid, or how to soothe her when she gets overwhelmed by your world? Do you know if she can use the bathroom? What assistance does she need? I’m Carrie’s mother and I barely have these things under control. But I do know the activities she likes to do and what triggers her to lose control.
< My Thoughts > “…I’m Carrie’s mother…”
There are so many issues to consider when asking someone to cover for you for even a brief respite period. Because of the everchanging nature of autism, even extended family members may find it difficult to step into a parent’s shoes for even an hour or two.
Note: More about ‘respite care’ in UNIT 6, Chapter 5; and ‘Visual Schedules’ in UNIT 3, #3 Social & Daily Living Skills.
Shepherd, D., Goedeke, S., et al. (2020) say that their study stresses that “ASD-related interventions are predominately implemented within the home and, what is more, they are not curative but more ‘palliative’ in nature.”
< My Thoughts > “…‘palliative’ in nature.”
Supports are not ‘curative’ but ‘palliative’ in nature, seems to mean here that the healthcare planning is more for a person with an ongoing complex illness or disorder, not able to be ‘cured’. Doing whatever it takes to keep the aging individual with autism functioning as independently as possible when treatment is no longer effective.
The Shepherd, D., Goedeke, S., et al. (2020) New Zealand study substantiates the body of evidence predicting that as a child grows older, unwanted behaviors become more challenging. Also, creating more parental stress and causing a critical need for both ‘formal’ and ‘informal’ support. Government therapy provided and private-pay with government-stipend therapy, respectively.
Most therapy takes place in the home, not dropping your child off at a therapists’ office or clinic. The government has seemingly close control over nine agencies to oversee services for the population on the Autism Disorder Spectrum.
This includes the following –
- Health District Board providing services within districts
- Ministry of Social Development giving disability allowances
- Respite Services including employing a support worker
- Early Intervention delivered to the family by professionals
- Ongoing Resources for the highest level of education or other services
- General Practitioners dispensing community medical care and contact for parents
- Pool of Private Therapists available to families at private-pay
- School Teachers for both specialized and general educating of students with autism
According to Cole, L., Kharwa, Y., et al. (2017), networking through Social Media for parents of children with autism has eight emerging ‘support’ themes. They claim the following are most important for parents –
- Communication support
- Behavioral support
- Feeding support
- Emotional support
- Informational support
- Foresight of a professional
- Positive experiences in the group
- Limitations of the group
Networking through social media was reported as a way to provide ongoing support for parents, caregivers, and even for clinical practitioners. Yes, several groups were said to have clinicians and network providers as a part of their online group meetings.
< My Thoughts > “…ongoing support...”
So many things are encouraging here, for instance the interest of clinicians who joined in to support the ‘critical issue’ discussions. Alarmingly, many family members care for the child with autism who can’t or won’t communicate, who can’t or won’t eat, who can’t function or thrive behaviorally. And, there are so many other situations needing ongoing support. Online meetings can provide a way to find that support; plus, many online groups provide retrievable meeting archives to search.
The first emerging theme which Cole, L., Kharwa, Y., et al. (2017) considered in the ‘support through media’ study was the ‘Communication’ support given; followed by Behavioral, Feeding, Emotional, Informational, Professional, Positive, and Limited –
Communication support is needed for delayed speech and language development; for variability, delay and/or regression in language growth. Also, for help with scripted speech, echolalia, expressive and receptive speech.
Behavioral support for restrictive, repetitive, and/or stereotypical ASD behavior. Mild to severe behavioral problems such as – attacking others, tantrums, meltdowns, plus other outbursts of behavior endangering self and others.
Feeding support was received, regarding how a child may have sensory issues leading to avoiding foods of a certain color, smell, texture, or shape. Also, information about eating routines, feeding difficulties, obsessive eating patterns, inappropriate eating behaviors, and introduce new foods.
Emotional support was provided and seemed to be a core function of this process. Sharing of information, companionship, acceptance, optimism, and the use of a social media App (‘WhatsApp’ social app) to create awareness. Participants in stimulating group discussions found that they were not alone.
Informational support for treating common childhood sicknesses, use of medication, and continuing suggestions of healthcare professionals. They also enjoyed information about social life, such as experiencing swimming and horseback-riding outings. They found these outings somewhat freeing them from a very isolated life. Because, they stated, “hardly anyone comes to their home to visit, anymore.”
Professional support from the presence of a health professional listening, but not necessarily leading the group. They may be making a variety of contributions, validating information and talking about priorities. Plus, helping with discussions of uncertainties and giving suggestions not recommendations.
Positive support in group experiences. Participants say that someone is always coming up with solutions or ideas which give members the opportunity to know and understand something they haven’t experienced before. Face-to-face meetings are available one-on-one, with the use of the ‘WhatsApp’ social online application.
Limits to support are concerning. Sometimes participants felt that time was spent on a subject which only applied to a very few. Or, support suggestions were not always practical, appropriate, or wanted. Others made it known that every once in a while, they felt that they were missing out on the normal world when they were reduced to only sharing in a support group. Many times, there were sessions of confrontation instead of comfort.
The study emphasizes that the group does not provide actual therapy, although one or more in the group present may be therapists or clinicians. But members have an opportunity to release negative emotions, and share common experiences. Support groups strive to provide followers with ways to create awareness, gain information, and increase knowledge. Hopefully, by networking through social media, participants will find they are receiving a better understanding of autism, and a greater sense of emotional support.
< My Thoughts > “Support groups…”
Studies show that parents seek out support groups for very different reasons. There are those who are looking for ways to cope with the ‘autism’ news. Others, who are seeking information, resources, and strategies to help them make connections, take action, and ways to move on. Most parents who joined online support or interest groups, stated that it was helpful, overall. But that sometimes you have to ‘shop around’ to find what fits your needs, because there are groups taking a one-size-fits-all approach.
Many parents want to find a support or interest group in their area or location. Others find a group that they can identify with, such as parents with an older child or adult who has just been diagnosed. Some parents are looking for ways to deal with their anxiety, depression, or seeking an overall sense of well-being for themselves. There are parents who are trying to find other ‘single’ parents, or parents who are on the spectrum themselves. Often parents look for a group whose participants have several children on the spectrum; or those with a large family, but only one child on the spectrum. So, the need to ‘shop around’ is very understandable, but shouldn’t be discouraging.
Bonker, E. M. & Breen, V. G. (2011) say, “Some of my closest friends are relentless autism moms whom I have never met face-to-face. We have met on the internet, creating our own virtual network of support. I know that I can contact them at any hour with some panicked question and they will send it out on our network to get the answer. Mostly, we talk about poop. Healthy poop is a holy grail in autismland. Enough said.”
< My Thoughts > “…relentless autism moms whom I have never met face-to-face.
“We have met on the internet, creating our own virtual network of support.” There are days when this must mean everything.
Clifford, T. & Minnes, P. (2013) researched a support group made up primarily of parents of children with autism, who came from Canada and the United States. They determined that joining an online support group was “useful in making the participating parents feel less alone and greatly increased their knowledge of resources.” Parents reported that attending ‘group’ online was empowering, giving them greater feelings of acceptance towards their child, and towards having a child with ASD.
One parent said that being able to provide assistance to another group member helped her in return. Another parent felt that after hearing others’ solutions, she was now better able to deal with her child’s behavior problems. Still other parents emphasized the value of learning with others about how to cope with their stress. Some stated that they were learning better ways to advocate for their child.
While there were those who felt that having more of an agenda or topic schedule would improve the discussions. Also, as one parent mentioned, it would be advantageous to have a long-term measured response to popular intervention programs. Others wanted to have more experienced parents of older children with ASD participating in their support group. There is so much information out there and so many like-minds online to have discussions with; it may be worth parents time to search them out. Isolation is the enemy of families with autism.
< My Thoughts > “Isolation is the enemy of families with autism.”
So many reasons to isolate, to keep your child, your family, and yourself safe from community exposure. My own experience with a disabled child goes far beyond staying home because of a bad hair day. Even my naturally ‘social self’, as a mom, a wife, a teacher, and a community member, can feel the raw exposure in taking my son from the safety of our home. Of course, eventually necessity forces us to step out that front door.
Senator, S. (2011) No one has a perfect life! Autism was not all of what Nat was. Autism parents must cope with the negative perceptions and stereotypes and seek ways to be happier and find that happiness with their children and on their own.
In her book, Susan tells how different parents found a degree of happiness and their “peace of mind” in novel ways.
Nancy Bea focuses on fine-tuning Henry’s medication and his educational program, through the use of visuals and a highly organized schedule.
Kim says her kids love amusement parks with carousels; they love to spin. We never let autism trap us in our home.
For Cathy, an ‘au pair’ solution was a godsend. Of course, not everyone can afford that, but perhaps you can find a local college student, guy or gal, to board with you, exchanging the price of rent for childcare. (Maybe even someone who is studying child psychology, or is in a teacher education program.)
For some it’s belly dancing, for others, it’s continuing with hobbies they love (painting, cartooning, & doodling). There are those who write poetry, join favorite competitions, and find escape for a while.
Rebecca and Beth enjoy scrapbooking, alone, creating, recharging. Then later sharing the creation with the family who loves seeing what they’ve done with their pictures.
Alastair has built a nursery with a huge collection of bonsai trees. His wife gave up smoking and began running marathons.
Bonnie says, “she’s become so into raising and caring for Beta fish that my family has threatened intervention.”
Eileen discovered motorcycling as her way of coping and creating balance. “It is so much fun to play dress up, put on my leathers and my biggest earrings, and go for a ride along the ocean.”
Susan reminded me that spiritual grounding can be an important aspect of self-care. “So, I go to yoga class and to Zen meditation.”
Amy feels like she’s accomplished something when after working out, she feels sweat pouring down her face. “I have burned four hundred calories with exhausting exercise. I’m revitalized by a hot shower and renewed spirit.”
< My Thoughts > “…a degree of happiness and their “peace of mind…”
Seeking ways to support yourself can become a creative and inspirational thing in itself. For me, it’s Tai Chi!
Senator, S. (2006) sums it up by saying that doing research occupied her fully and gave her a sense of purpose. As for my husband Ned, she continues, the information I had dug up gave him some peace, at last. I began to feel more peace of mind, too, as I understood better what we were dealing with and what I would have to do to help our son, Nat.
My next step was to locate other people like me. I called the local branch of the Department of Mental Retardation, which ran an autism support group at a nearby office. My first night at the autism support group, felt to me like coming home.
I should have trusted my gut to push harder, sooner. Because of the delay in diagnosing Nat, he had missed out on at least a year of potentially helpful therapies. I found strength and relief being with people who had been wounded like me, who had lost the dream of perfect children, who understood how harsh this world can be. I told my husband Ned about the meeting, but going to support groups was NOT his thing.
Senator reminisces about families, close friends, and certain of Nat’s teachers who all became part of what we called his ‘cult’, people who believe that he is capable of much more, because that’s what they want to believe. Nat’s cult has been our lifeline.
About friends, Jones, R. (2013) tells us, “I am who I am and I don’t hate being Autistic but it can be really hard to deal with the parts of autism that make it really hard for me to connect with other people.”
“For me, the hardest thing about living Autistic is how much distance it puts between me and others, because of my sensory sensitivities. It’s hard for me to go out in the world all day, every day, because the world is filled with bright lights, high-pitched sounds, bright colors, fast movement. The world is exhausting!”
Sicile-Kira, C. (2014) says – Persons with ASD may have a hard time making sense of their world. Sameness in certain areas provides a predictability and the security missing from an existence that they are having a hard time comprehending.
Clifford, T. & Minnes, P. (2013) recall a study which found that parents participating in support groups experience less stress and feel more positive about meeting their children’s needs. Needs such as, accessibly of transportation, much needed childcare, sharing similar experiences, or finding methods of coping, and solutions in correlation with religious beliefs. Whether parents were referred, found groups by reaching out on social media, or searched out for a support group on their own, participants of this study felt that the overall experience seemed to be well worth their time.
Senator, S. (2011) encourages us, “The sun will come up tomorrow and we will still have autism within our family. I can choose how I live with it.”
We do not have to trade ourselves for our children, or our happiness for our children’s happiness. Even something as confounding and difficult as autism can be for the family, it’s NOT the end of a happy life. Once we understand that, we will get there and it will all be OK.
One day you will feel that something inside you has shifted, lightened. When you look at your child, you will NO longer see a mass of problems, the broken things to be fixed; you will see your kid, just your kid.
One day you will know that this is your life, warts, autism, and all. And, you can’t wait to start living life to its fullest. Once you know this, you will have just won the game.
REFERENCES: INTRODUCTION, UNIT 6 CHAPTER 1 – NETWORKING & SUPPORT
Ambersley, K. (2013). Autism: Turning on the Light: A Father Shares His Son’s Inspirational Life’s Journey through Autism; eBook Edition.
Bonker, E. M. & Breen, V. G. (2011). I Am In Here: The Journey of a Child with Autism Who Cannot Speak but Finds Her Voice; eBook Edition.
Clifford, T. & Minnes, P. (2013). Who Participates in Support Groups for Parents of Children with Autism Spectrum Disorder? The Role of Beliefs & Coping Style; Journal of Autism & Developmental Disorders; V43, p179-187.
Cole, L., Kharwa, Y., et al. (2017). Caregivers of School-aged Children whith Autism: Social Media as a Source of Support; Journal of Child & Family Studies; V26, p3463-3475.
Damon, L. (2012). Knowing Autism; eBook Edition.
Golberstein, E., & Gonzales, G. (2015). The Effects of Medicaid Eligibility on Mental Health Services and Out-of-Pocket Spending for Mental Health Services; Health Research & Educational Trust; V50:6, p1734-1750.
Hinds, M. (2014). I Know You’re In There: Winning Our War Against Autism; eBook Edition.
Jones, S. R. (2013). No You Don’t – Essays from an Unstrange Mind; eBook Edition.
Potvin, J. (2013). Autism Triple Twist: Survival Stories of Parents, Triplets and Autism; eBook Edition.
Senator, S. (2006). Making Peace with Autism: One Family’s Story of Struggle; Discovery & Unexpected; eBook Edition.
Senator, S. (2011). The Autism Mom’s Survival Guide (for Dad’s, too!): Creating a Balanced and Happy Life While Raising a Child with Autism; eBook Edition.
Shepherd, D., Goedeke, S., et al. (2020). The Types & Functions of Social Supports Used by Parents Caring for a Child with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V50, p1337-1352.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, N. Y.: Penguin Random House Company.
Siri, K. (2010). 101 Tips for Parents of Boys with Autism: The Most Crucial Things You Need to Know; eBook Edition.
Siri, K. (2015). 1,001 Tips for the Parents of Autistic Boys; eBook Edition.
Wang, L., Mandell, D., et al. (2013). Healthcare Service Use & Costs for Autism Spectrum Disorder: A Comparison Between Medicaid & Private Insurance; Journal of Autism & Developmental Disorders; V43, p1057-1064.
APPENDIX A – Autism Network (AANE)
AANE offers three types of supports for post high school adults with Asperger / autism profiles:
The Asperger / Autism Network (AANE) provides support, education and training to people with Asperger Syndrome (Asperger's), Autism / ASD, and similar profiles. Retrieved online from – https://www.aane.org
ASPERGER/AUTISM NETWORK EMPOWERING INDIVIDUALS
· Online Community Connection Sessions for Adults - help relieve isolation during the COVID-19 pandemic by connecting with community members and AANE staff. (Free)
· Online "Open" Support Groups for Adults - (formerly called Ongoing/Drop-In) have an undefined number of group members with new people coming and going on a regular basis. (Free)
· Online "Closed" Support Groups for Adults- (formerly called Support Group Series) have the same members for a set number of sessions. (Pay what you can afford)
Adult support groups are facilitated peer support, not intended to be therapy. All groups are currently offered online due to the COVID-19 pandemic. Groups are limited in size, are facilitated by an AANE staff member, and require pre-registration. "Open" and "Closed" Support Group sessions last 90 minutes. Community Connection sessions last 60 minutes. Learn more about the guidelines and code of conduct for adult groups and events on the Adult Support Group and Event FAQ (Frequently Asked Questions) page.
Free Online Community Connection Sessions for Adults
Social distancing can be lonely, and quarantine restrictions play havoc with the routines adults with Asperger/autism profiles count on to structure our lives. Free online chat sessions to connect with other Community Connection Sessions are facilitated by AANE's Adult Services staff who have years of experience with Asperger’s and who understand the challenges that this COVID pandemic can pose.
DISCLAIMER (2024) Know Autism – Know Your Child: with < My Thoughts > by Sara Luker; 2024
Just to let you know that I, Sara Hayden Luker, have put forth my best efforts in presenting what I have learned about autism, by sharing the stories and studies of those who have gone before us. Any author’s mention of products, services, treatments, and interventions or actions are not to be considered an endorsement, thereof. Know that to some, autism is an ‘unregulated business’. The content of this website material, digital or in any other form does not represent medical advice; nor does it constitute medical suggestions in any way. The material, including any downloadable parts, is for informational and/or educational purposes only. Your download and/or use of any of this material indicates your acceptance of this disclaimer.
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