“When the 11th of June, 2021 came around, the day of our final meeting to find out my daughter’s diagnosis, we were all nervous. It felt momentous. We hoped the outcome would be what we wanted: autism. It might seem strange to want this result, but we knew it wouldn’t change the daughter we loved. It might, however, help her to understand and accept herself. The journey to the health center didn’t take long, but it would mean so much to us. It was a day we had long waited for, especially given the delays due to the pandemic, and a day that, rather than an end, would be a beginning.
When we emerged from the meeting, we were all relieved, but we were also grateful. Later that night, we talked about how lucky and privileged we were. Our area had only one speech and language assessment trained staff member, who as we were told ‘was brilliant.’ All our team were! Autism in girls is often underdiagnosed and overlooked, but thanks to the expertise available to us, we were able to get the outcome we needed and wanted. In the past, many, we were told, would have been turned away with an ‘inconclusive’ assessment.
Despite the wonderful team we had, we were now being discharged from their care. This essentially meant there would be no ongoing support or point of contact for future needs or questions. This, I believe, is largely due to the lack of resources and funding. We can only hope our school will continue to support Bronwyn and be able to offer accommodations as needed. However, we all know schools are also suffering due to low resources and lack of funding. There simply aren’t enough SEN (Special educational needs) staff and there isn’t enough money. On top of this, the pandemic has placed a huge burden on all teachers as well as teaching and support staff.
We have a lot of people to thank for supporting us including our primary school, which our daughter attended prior to moving to secondary school. They were instrumental in helping us access the autism pathway and providing supporting evidence. They were also supportive of Bronwyn throughout her time at the school, despite not knowing she had autism. During that period, we suspected she had sensory processing disorder but did not realize it was a result of autism.
My daughter is now almost twelve. Despite the support we’ve had, she has been dealing with the challenges autism presents, in a neurotypical world not designed for her, for her whole life. A world that often makes her feel out of place or weird. Without the knowledge or understanding from others of why these challenges present themselves.
More recently this has included being called a r*tard. Being made fun of for wearing headphones that reduce noise. Others not understanding why she is allowed certain accommodations, such as sensory toys in class or a pass to leave class when she becomes overwhelmed.
For a long time, our daughter wanted to access school without any special treatment because she felt to do otherwise would be cheating. Perhaps this is because we all internalize societal expectations and attitudes subconsciously. Encountering an ableist attitude is an everyday occurrence. People do not understand autistic people or people with autism deserve accommodations to allow them the same rights to access education. As with all invisible illnesses, the difficulties and challenges are overlooked by others.
When my daughter approached me about the poem, she sent it via our WhatsApp chat. I read the words and was blown away. Bronwyn has always loved and been talented at writing, but having read this poem, I knew her voice could be a voice for others. Initially, I asked her if it would be okay to share the poem with my husband and her dad, who just like me was blown away by the words. The piece is powerful but also tinged with the sad realities of life from the individual who experiences them.
A few days later, Bronwyn asked if I would share it on my social media. As a poet and author myself, I have a Facebook page with fantastic supporters. The poem is written in two halves, the first before the diagnosis and the second afterward. When I posted the piece, I didn’t change a single word. I told my page I had something special to share and urged anyone reading the piece to share and like the poem because I saw the importance of it. I hope you will too.
From the poet herself, ‘The first half of this poem was written pre-diagnosis and the second half about a week afterward. My headspace was changed after the diagnosis, though I would say I was still the same person, but having knowledge on the autistic community as a community and not a very very rare condition has changed.
‘I once thought I would have to meet a lot of new people to find someone who knew a little about how I was feeling. Turns out in the end, some of those people who I now very closely relate to live just around the corner anyway, and no person with autism (or autistic person) is the same. As easy as it is to slip up or not understand the differences between speaking about a community and stereotyping a community, I’m not anything but what I choose my identity to be. If I lived in the era when medicine was not the same and neither were the diagnoses for mental health disorders, I would still have a label, even if it was just an insult.’
Ever since I was little
I didn’t act normally
I found out quite quick
There was a problem inside of me
I made an agreement
Inside of my mind
That this problem was a secret
I simply had to hide
It made my skin itch
If I tried to wear certain clothes
And made my ears ring
I felt I was alone
And whenever I felt a little overwhelmed
My chest would tighten up
And I would cry out
I’d scream and shout
I didn’t want to seem
Like I was crazy
But I knew I would never act normally
I met some nice people
Who changed my point of view
I found there were people who felt this way too
I had to fight back against ableists every day
Because they felt like they could take my human rights away
But things are better now
And I am not hiding
I am proud.
Years passed and now it isn’t all in my head
Now it’s written briefly on paper instead
I’m not a human or a person anymore
I’m a label or statement that makes people look good
But it’s just for passing people to ignore
And for businessmen to implore
I am a joke with no rights left on the card
I am a tragedy and my life must be ‘so hard’
I am the first daughter’s friend’s son’s brother
On his mother’s side of the family’s niece who
Happens to be autistic
My mental illness is a party trick
They say we love maths and are so cute
And are always happy
Even when you kill us without mercy
We are a puzzle that can never be solved
But my feelings to the highest bidder
Can be sold
Your rude questions I get tired of hearing
And I know that when I cry
That it’s over my shoulder you’re peering
And no I don’t want your prayers
And you are the reason my identity has so many layers
But yes I am autistic
And no I am not a r*tard
And I understand that being around me in this state for you is so hard
It’s so hard that you can’t show basic empathy
Or yelling ‘stop that!’ at every stim you see
Believe me I hate my autism as much as you do
But it is also a part of me
And it will never leave purely
Because the demand came from the mouth of you.”
This story was submitted to Love What Matters by Sarah Northwood and her daughter, Bronwyn Northwood. Sarah is a best-selling author, and you can find her books here. You can follow their journey on Facebook and Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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