Autistic and proud: A mother’s story

When you think of Autism, what comes into your mind first? Rainman, as portrayed by Dustin Hoffman, or a child flapping their hands around, struggling to communicate? Both have autism, both are individuals.That’s what autism is, an umbrella name under a broad spectrum.

Some individuals are ‘high functioning’, with an amazing ability to remember facts and statistics, others have what would be described as “classic” autism with the three autistic traits: OCD, stilted speech and difficulties with social communication and interaction

Eva’s story

I’d like to focus on two examples, the first being a five-year-old girl called Eva. Eva was diagnosed at 4 years old, after it became very apparent in a mainstream nursery setting that she was showing the classic signs of autism (the 3 traits as mentioned above). This little girl couldn’t hold a conversation, couldn’t join in with ‘play’, couldn’t tolerate a noisy classroom due to sensory overload, but could count to 50 at age 3, way above the anticipated nursery entry level.  

Eva was picked to perform in the Christmas Nativity play and joined in with rehearsals, but on the day of the performance, because of the unfamiliar environment of the school hall and the sight and sounds of the audience, physically and emotionally could not participate in the play.

Also, Eva’s school day wasn’t spent in the classroom but in the corridor outside, a desk with a ‘safe place’ under it. A 1:1 TA was appointed to help support Eva but, generally, she was too scared and overwhelmed to join in.  

Breaktimes and lunchtimes were spent clutching a TA’s hand. The fast pace of the playground felt too overwhelming, and the reassuring hand grasp meant security for the little girl. Despite the dedicated presence of the 1:1 TA, Eva wasn’t progressing, but it seemed that her needs were not sufficient to warrant an SEN or ECHP being granted.

Autism as a label

Many individuals, parents or carers can fear that the ‘label' of an autism diagnosis will result in the individual being treated differently. In reality, however, it’s a ‘tool’ to accelerate access to the right support. It must be remembered that the person, post-diagnosis, is the same person they were the week before, the day before or even the hour before – they now just have a ‘label’. 

The autism ’label’ might also open up alternatives if the current educational setting is not proving successful, which is where my next example comes in.

Lucy’s story

Lucy, who’s 15, attends a special needs school. Initial observations would not cause you to think that Lucy is autistic. She answers when spoken to, is able to make her way independently around school and she participates fully in lessons, including extracurricular activities, such as after school clubs, music lessons and other opportunities.

Look beyond the surface, though, and you’ll find that Lucy answers when spoken to because she knows it is expected of her, she makes her way independently around school because it’s a familiar environment, and she joins in activities because she has received detailed instruction, gently and frequently, as to what will be happening.

Lucy will leave the ’cushion’ of school in a few years, and the transition to college has already started with a focus on life skills, managing money and more trips into the community.

Eva and Lucy have a couple of things in common. Firstly, they both experience meltdowns. For the older girl, this manifests in a vast degree of ’masking’ behaviour - emotions build up throughout the school day (similar to a coke bottle being shaken with the lid on), which are then released either when they see their ’constant’ in life, their parent or carer, or once they’re home, in their ’safe place’.

The second thing the two girls have in common? They are  actually the same girl, my daughter, and this is her story. When we received her SEN at the second attempt, she she was able to go to a special needs school when a place became available.

My reasons to be proud

My daughter entered her special needs school at the age of 6, unable to read or write and, with the smaller class/higher staff number ratio, has absolutely flourished. She now reads avidly, writes beautifully and has been described by her head teacher as a “role model”.  She is learning to play the flute and is in a pilot group of children at her school undertaking a Duke of Edinburgh’s Bronze award. She is also half way through an Art GCSE.

The lesson we have learnt from parenting our daughter and her high-functioning autistic brother is not to ‘sweat the small stuff’, and to focus on getting the correct diagnosis and supports in place for the individual child, and everything else will fall into place. I treasure every achievement for what it is, an achievement made in their own way and at their own pace, recognising the individuals that they both are.

About the author

Jeanette Cripps is a mum of two and blogger of AutismMumma, a wellbeing, special needs and autism blog. 

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