Being an autistic person living in a non-autistic majority presents many unique challenges. Lived experience describes daily trials with at times overwhelming stimulation, miscommunication, and emotional struggles, combined with reduced coping capacity, especially during crises. Differences in how autistic people might communicate and understand social interaction can complicate emotional and physical regulation, particularly in states of overload and confusion. Many autistic people report feeling isolated, lonely, undervalued, and generally excluded from significant aspects of belonging. Indeed, research shows that autistic people are at higher risk for suicide and co-occurring mental health conditions. Given that social support is typically associated with better advocacy and overall well-being, it would follow that proactively building a support network might positively affect the coping capacities of some autistic people, particularly when they are in crisis.
While my co-authors and I discussed this idea recently, it was apparent that autistic people often have great difficulty in finding support through mental health care services. As well, as an autistic person ages, important familial supports will age, too, and eventually become inactive (perhaps by death, geography, or illness.) Yet, support remains vital; when experiencing overload or even a crisis, a beneficial support network can assist in areas such as emotion regulation, perspective-taking, and lowering stress. Such a network can even aid in advocating for their needs. So, in an effort to foster development of such a support network, we developed a resource containing information and suggestions for building a personal support network.
The following resource is meant to allow for an individual approach in creating a support network. It is divided into four parts: Part I includes questions designed to help the autistic person identify people who may provide appropriate help when needed. Part II gives three specific tasks involved in making the support network. This leads to a longer Part III, guiding the user in making choices most beneficial in supporting their needs. This section considers many types of questions such as network size, goals, responsibilities, and added resources. Finally, Part IV discusses possible rules and expectations – complete with examples – to discuss in recruiting support network members.
As you consider using this resource, we want to make clear that it is developed from the perspective of lived experience, which has been quite valuable in effectively capturing what autistic people need across domains. It has not, however, been formally researched or standardized. This means that the resource can be molded, changed, or shifted to uniquely fit the person using it. It may need to be tweaked after its first few uses – pieces added or deleted – as every user will be different with differing needs and experiences.
The resource in its entirety can be found below. We hope it can contribute to fostering safety and stability, particularly in overwhelming or difficult situations. We welcome any feedback users might have as they progress in creating a support network.
The resource authors can be reached via email at: Lisa Morgan (lisamorganconsulting@gmail.com), Brenna Maddox (brenna.b.maddox@gmail.com), and Mary Donahue (drdonahue@mindfulpaths.me).
Creating a Personal Support Network: A Suicide Prevention Resource for Autistic Individuals
Developed by Lisa Morgan, MSW-CC, MEd., Brenna Maddox, PhD and Mary P Donahue, PhD
Research has shown that autistic people to be at a high risk for suicide and co-occurring mental health conditions. Autistic people have also had great difficulty in finding support through mental health care services. A support network can be beneficial to an autistic person and even provide assistance in advocating for their needs with mental health care services. This resource provides information and suggestions in building a personal support network for autistic people.
1) What is a Support Network?
People known to someone needing support:
- who agreed to support the person.
- who have given their permission to be contacted about suicidal thoughts and behaviors.
- who have agreed to give time and energy when they can.
- who care about the person they are supporting.
- who are working together to support a person challenged by something they can’t do alone.
2) How do you create one?
- Make a list of the people in your life.
- Cull the list to people you trust.
- Choose people to ask to be part of your network (see section III below).
3) Making Choices:
A. Choosing support person(s):
Think about the people in your life.
- Who do you trust?
- Who understands your way of being?
- Who validates your way of being?
- Who has shown over time they are invested in a relationship with you?
B. What is a good size for a support network?
- Support network sizes vary from person to person.
- The size of the support network is an individual choice based on availability.
- Consider how many people you want to know about your mental health challenges.
- Think about how many people you are comfortable keeping in touch with.
C. Support networks with more than one person can protect everyone’s:
- Time
- Mental health
- Responsibility (is shared)
- Access to support (for the person being supported)
- Ability to say, “No, I can’t right now.”
D. What if I only have one person?
- One person can serve as a support network.
- Make sure to discuss and agree on rules (see section IV. C).
- Use the resources available on the website: www.autismcrisissupport.com/resources.
E. What if I don’t have anyone who fits the criteria?
- There are resources available at the website: www.autismcrisissupport.com/resources.
- Consider using 988 with the 988 resource on hand during the call/ text/ chat.
- Develop a list of reasons for living using the Reasons for Living resource.
- Try using distraction strategies.
F. What is the goal?
- Connection – Texting / calling / video
- Distractions – sensory objects / special interest
- Reduction of means – can the environment be safer?
- Coping skills – finding joy, walking, moving big muscles
- Emergency services – if agreed upon if suicide becomes imminent
G. What if they say “yes”?
- Congratulations – you have started creating your support network. Keep going!
H. What if they say “no”?
- Thank them for their honesty and move to the next person on your list. If there’s no one else on your list, return to Section II to see if you missed anyone. If you didn’t miss anyone, consider using 988 with the 988 resource on hand during the call/ text/ chat (www.autismcrisissupport.com/resources).
4) Rules – what to expect
A. Why are rules necessary?
- Rules set expectations for both parties.
- Rules help to respect the time of the people in a support network.
- Rules set comfortable boundaries.
- Rules increase the probability of the support network being used.
- Rules keep everyone in the support network safe.
B. What are the importance of the rules?
- A support network is a social construct, and social constructs need rules to work effectively.
- Without rules, a rule-based autistic person can feel more alone than they have ever felt in their lives after putting a support network into place and then not having access to it because it lacks rules.
- An autistic person may not understand the rules and so will not utilize the support network they have worked hard to put into place.
- Not being able to access the support network they put into place means they can experience loneliness, unmet needs, misunderstandings, and aloneness to a degree they have not experienced before.
- Not having rules can put an autistic person into crisis because what they thought worked for everyone else has not worked for them, cementing their thwarted belonging firmly into their core belief about themselves.
C. Examples of rules to discuss with your support person:
- Shared understanding – the support person may not respond immediately, and that is ok. They could be otherwise engaged and will respond when they can.
- Accountability – there is no “blame” or “responsibility” if an attempt or death takes place after a person reaches out to someone in their network.
- Expectations – discuss expectations about goals for support (e.g., people in the support network are there to support, not fix).
- Call back – discuss the plan for reconnecting if a call is disconnected.
- Need a break – discuss the possibility of taking a break to regulate self-care when you are safe to do so. It’s important to communicate that you are safe and will contact your support person when you’re ready.
- Follow up – discuss a plan for the support person and autistic individual to check in post-crisis regarding next steps or further support. Part of this debriefing process could include suggesting changes to improve the experience in the future (e.g., adding a new rule, clarifying the goal of the connection).
Mary P. Donahue, PhD, is Psychologist / Consultant at Mindful Paths Psychological Services. For more information, email drdonahue@mindfulpaths.me.
