Our outreach efforts have been met with great success and each day, more people contact us to request help. While highlighting the value of autistic citizens, it is important to share the isolated life and desperation of people for whom we can do little but offer empathetic words.
Thousands of individuals on the autism spectrum struggle with the inability to articulate frustration and physical pain which may cause them to harm themselves and/or others. This is an example from a family who has reached out to the Autism Housing Network for help:
After being told numerous times that nothing can be done and they are on a waitlist for help, a family in Texas, who could not keep their autistic daughter nor other family members safe at home due to her self-injurious and harmful behaviors towards others, recently brought their daughter to the ER in a desperate attempt for help. They were lucky to have two parents who could bring her to the hospital, as one was needed to keep her from kicking out a car window or from grabbing the other parent who was driving – other families must call the police or ask for an ambulance. The mental health professional on call could not find a safe place for their daughter in all of Texas. He called every behavioral health hospital, psychiatric facility and even the state hospital to find her help, and they all refused to take her because her case was “too hard.”
This man who was trying to help this family broke down in tears because he could only offer them two options:
1) medically restrain her at home with a sedative, or
2) give up all parental rights and she will become a ward of the state and go into the foster care system
If professionals at a psychiatric ward won’t even take her, how long will she last in a host home?
This illustrates the outcome of many desperate pleas from families who cannot find help. We do not know how many people on the autism spectrum suffer from involuntary self-injury or violent behavior. There is a dearth of opportunities, services, and supports for these children, teens, adults and their families. We have anecdotal evidence to show how these intense struggles emerge more prominently during puberty and young adulthood. These growing teens and young adults lose their educational supports at 21, their families fall into crisis, and parents are forced to leave their jobs to care for their loved ones at home.
Thankfully, the Interagency Autism Coordinating Committee (IACC) has acknowledged that this is a population on the autism spectrum that needs immediate help and research for solutions. They brought in expert Dr. Matthew Siegal to speak about Aggression and Self-Injury: Research Needs for the Severely Affected End of the Spectrum. Many families offered testimonies and pleas for more research to help their loved one. Hear their voices, starting at 2:58:00 in this video recording of the meeting.
Dr. Matthew Siegal shared some of the distinct challenges that face this population of autistic adults who suffer from self-injury and violent meltdowns:
- Most service providers refuse to support this population. This may be due to lack of funding for needed staff ratios, disruption to those they already serve or their lack of expertise and qualified direct support professionals.
- These individuals and their family members are isolated in their home and/or medically restrained as being out in the community may be too overwhelming, distressing or dangerous for themselves and others.
- Very few respite providers and direct support professionals are trained and not properly compensated to serve these individuals and families. This isolation and inability to find non-family support or services leads to unfathomable stress that has negative financial, physical and mental health effects.
With these challenges stated, we know there are compassionate neighbors who seek to be of support but may not know how. Thus, here are 10 practical tips on how to be of support to autistic individuals struggling with challenging behaviors:
- ALWAYS say hello and talk to the individual with autism, even if it seems they are not listening or whether they can talk back to you. Do not treat them as if they are not in the same room.
- NEVER talk to them in a voice or tone typically reserved for children if they are an adult.
- When you go to the grocery store, ask if you can pick anything up for them.
- Share that you would be happy to help drive and be of assistance as needed for appointments, errands, events, etc.
- Offer any help and support to the siblings of people on the autism spectrum, as they may not be given as much attention or support as their siblings. Ask if you can help give rides or a fun day to a sibling who may not always get the attention or support they need.
- Ask if there is any adaptive technology, equipment or programs that would greatly benefit them, but may not have access to, possibly due to a lack of funding. If so, help them gain access to these tools, such as helping to raise money.
- If a meltdown is occurring, do not try to intervene without first asking how you can help. Additional touch or sounds without prior knowledge can make their issue worse. If a meltdown is occurring, and you have been requested to stay away, support the person by standing up to people who may potentially be causing them distress, such as bullies or others who seem judgmental.
- Call them or their caregivers, if only to at least say hello. Always ask if there is something you can help them to do. Families often will not reach out for fear of burdening others.
- Instead of solely inviting them to your house, extend an offer to bring dinner or lunch to their house if more comfortable. Bring disposable flatware and plates or offer to do dishes as well.
- Bring small tokens of thoughtfulness or gather items that bring people comfort and offer them as a gift of acceptance and support. These items are typically VERY individualized, so it will take time to understand what this could be for someone on the spectrum. (e.g.: red straws, small pig figurine, yellow silk flowers, etc.)
As a community, we must acknowledge both the strengths and challenges of including people on the autism spectrum in our communities. We know there are nearly one million adults with intellectual or developmental disabilities living with family members who are over the age of 60. What will happen when their primary caregiver can no longer give their care and support?
Please share in the comments other ways we can make a difference for those who are all too often isolated for lack of support.
As part of Madison House’s Autism After 21 Day initiative, we’ve developed a series of mini-documentaries called #Imagine21 that feature the lives of autistic adults with diverse personalities, lifestyle, support needs, employment, and places they call home. These films and proclamations of Autism After 21 Day highlight the amazing contributions that autistic citizens offer their communities. By modeling inclusion and acceptance in film, we encourage others to be more mindful in including these great employees, volunteers, people of faith, and friends. We would like to bring awareness and suggestions on how to be more supportive of autistic individuals struggling with challenging behaviors.
I need to join the discussion with other parents who are struggling with appropriate housing for autistic young adults.
We have been searching and asking for help for over two years now with little progress – we would love to be part of such a group around housing
As I am getting older I need to develop a plan for my son to move on his own and hopefully thrive.