What This Autistic Mother Wishes Social Workers Understood

Dear Social Worker,

Please understand that when you are dealing with an autistic child, you may also be communicating with an autistic parent.

Misunderstandings can happen with any parent, but when a mother with autism is being misunderstood…

You may interpret her communication as obstructive when she has a social communication disability. She is doing her best. When you are starting to “get your back up,” please stop and rethink and rephrase.

You may think she is aggressive and shouting. She may struggle to moderate her tone of voice, and may lack some self-awareness, particularly in times of great stress and anxiety when her adaptive skills are lowered.

You may think she is not engaged with you and not seeming to take an interest in what is happening in the meeting. That mother’s whole body — how she feels, sees, hears and smells her environment may have reverted to a basic “fight, flight or freeze” protective mechanism.

You may think she is overly focusing on the disability of her child. That mother might be reading everything she can find, doing more research and asking more questions than what some professionals may find comfortable. She is trying desperately to help her child and find answers. And maybe, she took very literally the advice you gave her to “give an example of the worst day.”

You may think she is overly controlling when she tries in vain to control her situation. She may not know the hierarchy of the system — who can and cannot be useful, who can or cannot make decisions, who is or is not influential.

You may think she will not accept help offered, and is not coping, because she has not been told the processes with which she needs to engage. The uncertainty of not knowing what is coming next, how long it will last, or what her role is can be overwhelming.

You may think she has not formed a strong maternal attachment to her child, when she knows her child. She knows how they need time to process their own pain. She knows when her child is overloaded, the worst thing she can do is to touch and give additional input to her child.

You may think a lot. But the facts are, nearly half of dads with an autistic child will have autistic traits themselves. Girls are referred for an assessment far less often than males, and in the U.K. over 80 percent of general practitioners admit to not knowing enough about autism to feel comfortable making a referral.

There are families right now that need you to listen and “do.”

Do become aware of how women with autism may present differently than men.

Do give her any paperwork at least three days before a meeting.

Do make sure meeting rooms are comfortable and sensory-friendly.

Do give her natural light.

Do give her a position where she can see who may be walking behind her.

Do give her a flowchart of the system, and show her what stage she is in.

Do make your communication clear, concise and without hidden meanings.

Do tell her who will be working with her, their role, their limitations and what they can do to help her.

Do allow a trusted friend or advocate to be with her.

There are many good social workers in the U.K. and beyond working well with families. Be one of them.

Regards,

An autistic mother struggling to be heard

Learn more at Autism Women Matter.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images