A Letter To Social Workers From Autistic Mother’s Struggling to Be Heard

Dear Social Worker,

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

When a mother 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 her 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 … her entire sensory system how she FEELS, SEES, HEARS and SMELLS her environment has her revert to basic ‘fight flight or frozen’ protective mechanism.

You may think she is fabricating illness in her child or overly focusing on the disability of her child to the detriment of the child’s sense of identity. That mum has read every single word written, researches and asks more than questions than maybe what makes professionals comfortable. She is trying desperately to help her child and find answers to help them. And maybe, she took very literally the advice you gave her “tell the worse day example”.

You may think she is overly controlling when she tries in vain to control her situation because she does not know the hierarchy of the system … of 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 not coping because she has not been told the processes she needs to engage with … the uncertainty of not knowing what is coming next, how long it will last or what her role is.

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 pains. She knows that when her child is overloaded the worst thing she can do is to touch and give additional input to her child.

You may think alot. 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 than males and in the UK over 80% of GP’s 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 may present differently to men

DO give her any paperwork at least 3 days before any meeting

DO make sure meeting rooms are comfortable and are 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 her a trusted friend or advocate to be with her

 

There are many good social workers across the UK working well with families. Be one of them.

Regards,

Autistic Mother’s Struggling to Be Heard.

from http://www.autismwomenmatter.org.uk/blog...