What to do when the support is not there

Supporting an autistic person, whether you're a parent, carer, or an autistic adult yourself, can be both rewarding and tough.

But sometimes, the support you need just isn't there, leaving you feeling isolated, frustrated, and stressed. Knowing how to get through these times and where to find help is important.

Recognising when support is lacking is the first step. This can show up in a few different ways:

• Emotional strain: Feeling overwhelmed, stressed, or unable to cope with daily responsibilities.
• Physical fatigue: Experiencing exhaustion from the constant demands of caregiving without adequate breaks or assistance.
• Financial pressure: Struggling with the costs associated with autism support, including therapy, medical appointments, and specialised equipment.
• Social isolation: Lacking a supportive community or feeling misunderstood by friends and family.
• Lack of services: Finding it difficult to access local services, such as respite care, support groups, or specialised education.

Strategies for coping

• Build resilience and prioritise self-care. Take time for activities that recharge you, like reading, walking, or simply enjoying a quiet moment.
• Try mindfulness and relaxation techniques, such as meditation or yoga, to reduce stress and improve mental health.
• Set boundaries. Be clear about what you can and can’t do, and don’t hesitate to say no when you’re feeling overwhelmed.
• Seek professional help. Counselling or therapy can offer emotional support and practical strategies for managing stress. A healthcare provider can also help if you’re feeling physically exhausted.
• Consider using support workers to lighten the load and make caregiving more manageable.
• Tap into online resources. Webinars, online support groups, and social media platforms like Facebook or Reddit can offer valuable information and a sense of community when you’re feeling isolated.
• Engage with local autism support organisations and volunteer networks to find resources, connections, and even companionship.
• Explore day programs and employment opportunities for your autistic person. These can keep them engaged and give you some much-needed respite.

See more at mental health and wellbeing.

When support is unavailable, planning for the future becomes even more critical. This includes financial and legal planning. See also Respite and Community support.

Living without adequate support can be incredibly challenging for parents, carers, and autistic adults. But you can manage these challenges by identifying the gaps, using coping strategies and seeking help. Remember, even if support isn’t available right away, there are resources and communities ready to help. The important thing is to stay informed, connected, and proactive in finding the help you need.