5 Things to Know about the Mother of a Child with Autism – Part 4

This post is the fourth in a 5-part series in honor of World Autism Awareness Day.  The series introduction is included in the first post, Part 1.  To see previous posts in this series, see:

Part 1: She may feel relief upon the receipt of an autism spectrum disorder (ASD) diagnosis for her child.

Part 2:  She may experience the conflicting emotions of grief and hope.

Part 3:  She fears exclusion.

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#4      She needs your respect, not your opinion or advice.

When I interviewed mothers of children with special needs, I asked all of them the following question:

“Did you ever receive unwelcome advice from family or friends?”

Without fail this question generated the most passionate and comical answers.  Nearly every mother shared a story of how a friend provided unasked for “counsel” after spending a few minutes on the internet or talking to one other person who knew someone who knew someone else diagnosed with autism.  Mothers shared that they dreaded having to smile through other people’s personal stories and advice.

The interviewed mothers conveyed that they appreciated the interest of caring friends and family.  But oftentimes those friends were unaware of all the details and nuances related to their child’s diagnosis.  In addition, mothers communicated that it felt demeaning at times to be on the receiving end of unasked for advice.  All of the parents I interviewed were well-informed themselves and pursuing treatment for their child through multiple medical and education professionals.

• Invite a mother to share what she is learning on the autism journey.  Listen without developing an opinion for how she is processing the diagnosis or pursuing a treatment plan.
• Refrain from offering unknown assurances for a child’s prognosis unless you have experienced something similar.
• Avoid sending emails or sharing stories of other families with a similar diagnosis. Only relay a story if you know the mother is ready to receive the information and if the situation is truly similar.  Processing another family’s experience may require emotional energy, which is usually in short supply inside a family new to any special needs diagnosis.
• Do not share of the child’s diagnosis with others unless expressly given permission.
• Research the diagnosis in order to better understand the parents’ concerns, not so that you can “advise” the family.  Refrain from discussing your findings unless the topics naturally surface.
• Be sensitive and not dismissive to any expressed parent concerns for issues that may seem insignificant or unlikely.  Parents may be aware of possible outcomes specific to their child’s diagnosis that are not common knowledge.
• Do not suggest that either parent join a support group until they have expressed an interest.
• Avoid expressing an opinion on the autism-vaccine controversy or the merits of any autism treatment plan. Every family’s experience with autism is different.  Respect that what works for one child may not work for another.

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Part 5:  She values action over empathy.

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– Amy Fenton Lee