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.

 

AWM slide 1

 

Author: Monique Blakemore


17 Comments

  1. FionaD

    I’m certain I haven’t got autism, but as a Mum with two boys with autism and on a Child Protection Plan for not engaging with Professionals (I really do!) much of this still resonates with me.

    • Hello,
      I am so sorry you are going through that. So often, it is not US that are not engaging, it is the services not engaging with us in ways that allow our menaingful inclusion.
      Really hope for the best for your family. Take care of you x

  2. jai patch

    Hopefully this is being distributed to every Director of Children’s Services for posting next to the departmental kettle! So true, so unheard…

    • Thank you Jai,
      AWM keeps trying to raise understanding for mothers. It will change. It has to.

  3. G.W. Job

    Thank you so much!
    From a retiring Social Worker

    • With pleasure G.W. Before you retire, if you could share this with your colleagues it would be ever so helpful!

  4. This happens in the United States as well…

    • Hello Kathy,
      Unofrtuantely it is happening in many countries and AWM hears from mothers that very much need help. I hope you are ok x

  5. I am the mother of 3 with one son who has struggled for over 7 years dealing with this problem, not being informed of procsses, being thought of as a little bit over the top, not taken seriously when presenting the issues of my child, not shown the respect we deserved, refered to completely innappropriate agencies.. it has taken 7 years to get an autism diagnosis for my son and we have been through hell and back again but finally we are getting the appropriate help. Key workers in child mental heaith shoul all be given a copy of this. :)

  6. I can pretty much relate to all of that, my whole life seems to be a battle to get whats right for my boys….one was diagnosed at 6 another not until he was almost 18…and still I’m fighting, no help, authorities don’t listen….thanks for sharing this, its good to know I’m not alone

  7. I have not been diagnosed Autistic but have wondered if i have a touch of Aspergers this is how i feel at the moment with trying to get help for my son i Live in New Zealand and im fighting to get answers and a diagnosis because there is no help here without a diagnosis New Zealand is a long way behind the UK and USA as far as services providing support or help for our children.

  8. Aspie Mom

    I am based in the UK and a mother of a child with ASD and ADHD and I have fought tirelessly for 5 years+ for him to receive the correct support in (mainstream) school to meet his needs and had been branded vexatious, accused of not engaging with professionals, told that my level of attention to detail was indicative of mental health problems and a whole host of other totally unfounded slurs borne from the fact that I didn’t sit idly by as my son was catastrophically failed. I should say at this point that I have never nor would I dream of been anything other than professional in my interactions with professionals and whilst I acknowledge that they may not have like what I said, I have always said it politely. I sought input from anyone I could think of and contacted the boss of every agency and organisation I had ever come across, but it was to no avail and ultimately it all culminated in my son being removed from my care for almost 10 months (though I’m very happy to say he has been home since June 2015).
    In the year previous to his removal, I had been accused of Fabricated Induced Illness and then neglect on grounds of personal hygiene, both of which resulted in ‘no further action’ because both the school SENCo and health consultant that had raised the claims against me, having taken such great exception to me for what they perceived was me challenging their authority, had also conversely documented in their own reports (specifically those for the Statement of SEN) that my son’s needs were legitimate and the behaviours he exhibited were as a result of his special needs.
    During what ended up being a very drawn out year long court process I was subject to all sorts of accusations and demeaning assessments but when I was diagnosed with ASD (specifically Aspergers), things changed dramatically. Don’t get me wrong, it wasn’t suddenly plain sailing once I was diagnosed and initially the focus in court shifted to whether an adult on the spectrum can effectively parent a child on the spectrum so more assessments and its associated trauma for me ensued. But they were ultimately helpful as they broadly identified that I was the best person to care for my son as I understood his needs better than anyone else would.
    All the aspects of the article above resonate with me deeply and it’s a real disgrace that the so called ‘professionals’ who are entrusted to support your childs special needs in Health and Education (in our case the diagnosing clinician and the SENCo (Special Educational Needs co-ordinator)) can fail to have the ability or more often the desire to acknowledge that parents often have the same needs. Though I wholly agree that for many, and to a certain extent this is true for me despite being on the spectrum, the professionals often prefer to label a parent as a trouble maker and actively target them, ploughing all their focus into discrediting them rather than putting their energy into supporting the child which again, seems very unfair and against everything they are meant to stand for, because certainly in my case, even if I had been the vexatious, obstructive and thoroughly unpleasant parent they initially portrayed, that should never have stopped them from providing the support to my son that he so desperately needed.
    I would like to add that we do have one of the ‘good ones’ as far as Social Workers go now, but in my experience I’m in the minority which is such a shame and we have also experienced the not so good that would benefit from reading the above article; perhaps they take their lead from the professionals in Health and Education who are deemed to be ‘in the know’ about special needs.

  9. We have just been told my nearly 14 yr old son has autsim ive asked since the age of 5yrs old if he could have something becouse he didnt want to go to skool an the trouble we had tryin a get him there. He hates large crowds busy places doesnt like partys wont leave the house school called social workers an he is now on a home supervision order because he wont talk to other people other than family an sum close friends from school he has a social comunication disorder an they cant seem to understand this

  10. Hi,
    I am a Speech Pathologist becoming (almost now) a Social Worker and think this is fantastic, thankyou

  11. Jessymum

    Thank you from an Autistic (dx. Aspergers) Mum of an Autistic kid (dx. Aspergers) … it can be SO HARD to advocate for yourself/your child!

  12. Lucy Browne

    That’s a great letter. Have you emailed/sent it to child services/social work departments all over the
    UK?

    One thing… It’s Autistic Mothers, not Autistic Mother’s. Similarly, it’s Autistic Authors, not Autistic Author’s.

Leave a Reply

Your email address will not be published. Required fields are marked *


Did You Like This Article?

Please share this post and help your friends understand more about autistic women & girls!