I’m proud to be the Mumma to an Autistic Daughter #autism #autisticpride

By | June 17, 2019

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 individual.

Because 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 a lack of awareness of social skills) and then there is the severe end of the spectrum with the little or no speech, physical difficulties and an vastly decreased emotional age versus actual age.

All are autistic and autistic children will grow up to become autistic adults.

There is no cure for autism, but (with the most appropriate support for that individual) coping mechanisms can be learnt.

I’d like to focus on two examples, the first being a five year old girl, 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 classroom full of children due to sensory overload but could count to 50 at age 3, way above the anticipated nursery entry level.

The little girl was too overwhelmed by the environment to read or write but would point out numbers everywhere, on doors, on buses, on supermarket shelves.

The little girl 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 be a part of the play.

The little girl’s school day wasn’t in the classroom but in the corridor outside, a desk with a “safe place” under it, a 1:1 TA was appointed but the little girl was too “scared” and overwhelmed to join in.

The little girl who’s memory for numbers was way ahead of her peers, was placed on the lowest level table when she could join in class because there was nowhere else she could go.

Breaktimes and lunchtimes were spent clutched onto a TA’s hand as the fast pace of the playground was too overwhelming, the reassuring hand grasp meant security for the little girl.

Always accompanying the little girl were a number of small bags, each containing items of comfort which could be taken out when needed, acorns, leaves, playmobil figures, laminated sheets etc, all very important to the little girl, of little interest to others.

Despite the dedicated presence of the 1:1 TA, the little girl wasn’t progressing but it seemed that her needs were not sufficient to warrant an SEN or ECHP being granted.

For the little girl, any sensory overload resulted in an emotional or physical outburst, or a meltdown, sometimes over as quickly as it began, sometimes longer-lasting, which if it were hours, could be emotionally and physically draining.

You might be thinking why have I used an example of a girl, do girls have autism?

The answer is “yes”, girls do have autism but seem to be more able – apart from my example above – to mask their traits, meaning that by the time additional support might be needed (for example, in the transition to secondary school), it is harder to source, as a pathway to a diagnosis (or “label”) may not have been considered.

The “label” of an autism diagnosis can be off-putting for individuals, parents or carers, the fear that a “label” will mean than the individual will be treated differently, when in reality, it is a “tool” to accelerate putting support in place and it must be remembered that the autistic individual post-diagnosis is no different to how they were the week before/the day before or even the hour before – they are the same person, but they now have a “label”.

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

In a special needs school, there is a girl of 15, to instantly look at her, you wouldn’t think she was autistic, she answers when spoken to, is able to make her way independently around school and participates fully in lessons, including extra curricular activities such as after school clubs, music lessons and other opportunities.

Looking beyond the surface and you’ll find that the girl answers when spoken to as she knows it is expected of her, makes her way independently around school as it is a familiar environment and joins in activities as she has received detailed gentle and frequent instruction as to what would be happening.

The teenage girl will leave the “cushion” of school in a few years and the transition to college/a further setting has already started with the focus on life skills, on managing money and more trips into the community.

Meltdowns are something the two girls have in common, in the second example, there is a vast degree of “masking” happening, which is when any emotion builds up throughout the school day (similar to a coke bottle being shaken with the lid on) and then it is released when either they see their “constant” in life, their parent or carer or once they are at home, in their “safe place”.

Autistic adults have meltdowns too, a meltdown in an autistic adult can have more physical impact as obviously they are far stronger and of bigger build than a small child.

Autism isn’t something that can be grown out of.

The other thing the two girls have in common is that they are the same girl, my daughter. We received her SEN at the second attempt and it being granted meant that she could go into SN school once a place was available.

She entered SN school at the age of 6, unable to read or write and, with the lower class numbers/higher staff ratio has absolutely flourished!

She 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 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 that we “don’t sweat the small stuff”, we focus on what is important and we 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.

I prefer not to use a puzzle piece when I write about my children, but more a tree, with ever-growing leaves as they progress through life

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