When the support is not there

Navigating the complexities of autism can be challenging, not just for the individual diagnosed but also for their families.

Among these challenges is dealing with unsupportive or uninformed comments from people who may not understand autism well. These remarks, ranging from misguided advice to outright dismissive statements, can be hurtful and isolating. 

Understanding the impact of words

Words can be impactful and hurtful when they come from a place of misunderstanding or stigma. Common statements like "He doesn’t look autistic to me" or "You’re just lazy parents" reflect a lack of understanding about autism and its wide spectrum of representations. It is important to recognise that comments often come from ignorance rather than malice. Understanding this can help create an informed and educational response rather than a confrontational one.

Strategies for responding to unhelpful comments

• Educate when possible: If the situation allows and the person seems open-minded, use it as an opportunity to educate them about autism. Simple explanations about how autism affects individuals differently can be enlightening and help dispel stereotypes.
• Choose your battles: Assessing when it’s worth correcting misconceptions is important. Sometimes, especially with strangers, letting comments slide might be more beneficial to avoid unnecessary conflict.
• Use resources: Educational resources, such as articles or websites from reputable organisations, can be helpful. Directing people to these resources can help them understand autism better on their own time.
• Seek support: Engaging with communities and networks that understand autism can provide emotional support and practical advice on handling situations.
• Set boundaries: It's okay to set boundaries with people who consistently make hurtful comments. Tell them how their words affect you and why such comments are inappropriate.
  

Navigating family denial 

When a child receives an autism diagnosis, the impact resonates beyond the immediate family to include grandparents, aunts, uncles, and cousins. Sometimes, these extended family members may not fully accept the diagnosis, creating a challenging dynamic for the parents, particularly the primary carer. Understanding and navigating this denial effectively can be crucial for maintaining family unity and ensuring the best support for the child.

Understanding the denial

Denial among extended family members often stems from a lack of knowledge about autism or from preconceived notions about what autism is and isn't. Some family members might have outdated views or believe in common misconceptions, such as associating autism solely with visible behavioural differences and not recognising it as a spectrum of conditions that can manifest very differently from one person to another.

For others, denial can be an emotional response to fears about the child's future or discomfort with the unknown. It's also possible that some family members might feel a sense of guilt or responsibility, which leads them to dismiss the diagnosis rather than confront it.

Time and education

Time can be a significant healer in helping family members come to terms with a diagnosis. Initially, the news can be hard to digest, especially for those not living with the child and seeing first-hand signs and symptoms. Giving family members time to process the information without pressure can help them move through their initial reactions at their own pace.

Education plays an important role in changing perceptions and reducing stigma. Sharing resources, such as articles, books, and videos about autism, can help family members understand the condition better. Inviting them to join you at appointments or meetings can also be beneficial. Professional assessments or interventions can provide concrete evidence of the diagnosis and the potential benefits of support and therapy.

Strategies for coping with family denial

• Open communication: Create an environment where family members feel safe expressing their doubts and concerns. Address these with factual information and personal experiences that highlight the child's needs and behaviours.
• Professional involvement: Sometimes, hearing information from a doctor, psychologist, or autism specialist can be more convincing than from a parent. Consider arranging a family session where professionals can explain the diagnosis and the importance of support.
• Set boundaries: While it’s important to be patient, it’s also essential to set boundaries to protect the child and the primary carer from potential negativity or misunderstandings that can be harmful.
• Focus on the positive: Emphasise the benefits of recognising and embracing the diagnosis, such as access to tailored educational programs, therapies, and community support that can significantly improve the child’s quality of life.
• Seek support elsewhere: If family denial persists, it might be necessary to rely more heavily on support from friends, support groups, or other families who have gone through similar experiences. This network can provide both emotional support and practical advice.

The importance of patience and persistence

It's important for parents to remember that while they are adjusting to the new reality of an autism diagnosis, their extended family members are also on their own journey of acceptance. Patience and persistence are key. Continuously engaging with family members, addressing their concerns, and allowing them to see the child's progress can slowly transform their perceptions.

Handling unsupportive friends

Dealing with unsupportive friends can be particularly challenging, especially since these are the people you expect to be your primary support network.

• Open communication: Initiate discussions about autism with your family and friends to help them understand your experiences. Be open about what support you need from them.
• Provide resources: Share books, articles, and other resources to help your loved ones learn more about autism at their own pace.
• Express your feelings: Tell them how their actions or words make you feel. Sometimes, people do not realise the impact of their words until it is communicated.
• Seek external support: Sometimes, professional help in the form of family therapy can be beneficial in improving understanding and communication within the family.
• Focus on positive relationships: Invest more time and energy in relationships with people who provide the understanding and support you need. Positive relationships can be incredibly sustaining.
  

Dealing with unsupportive people while managing autism requires patience, education, and sometimes, firm boundary-setting. It’s important to remember that you are not alone, and there are many out there who understand and support you. Building a network of supportive relationships and focusing on positive interactions can make a significant difference in your journey. Autism is a part of your life or the life of your loved one, and with the right approaches, understanding, and support, navigating social interactions can become less daunting.