PARENTS

15 Things Parents Of Children On The Autism Spectrum Want To Tell You

Diagnosis is life changing - and that can be a good thing.

02/04/2016 07:00

People with autism and their families feel "isolated" because of poor public understanding of the condition, a new study has revealed.

The survey of more than 7,000 people found that 79% of autistic people and 70% of their family members feel socially isolated.

The findings, released by the National Autistic Society (NAS) ahead of World Autism Awareness Day on Saturday 2 April, also found that 74% of family members said people tut or make disapproving noises about behaviour associated with their child's autism.

More than one in every 100 people in the UK is diagnosed with autism according to the NAS, and if you include their families, autism touches the lives of 2.7 million people.

Yet there is still a lot of misunderstanding surrounding the condition. The NAS is calling on the public to find out more about autism so they can respond to people on the spectrum with more insight.

So with that in mind, here are 10 things HuffPost UK bloggers who are parents of children with autism, want to tell you:

FotoimperiyA via Getty Images
More than one in every 100 people in the UK is diagnosed with autism (photo posed by models)

1. Don't fear diagnosis - it's a good thing.

"After the initial shock, the 'why us?' and upset I've actually cried less and felt more positive since the diagnosis" writes Georgy Jamieson. "We're no longer in 'limbo' waiting for something to happen and feeling lost somewhere in the system.

"The boy is still the boy. He hasn't changed. His world is still as it always was and we're very keen to keep as much stability and normality in his life as possible.

"The school are being brilliant and so supportive. We have an additional homework schedule in place to assist with his phonics, letters, numbers and handwriting and as a result they are all improving."

2. But the diagnosis doesn't define my child - they are more than a label. 

"You may look at my son and see a child with autism. Or you may look at my son and think he doesn't look autistic at all," writes Michelle Myers.

"But when I look at him all I see is his bright toothy smile, his infectious giggle and the long locks of brown hair that he hides behind when he talks to people, I see my son. (Who also happens to be autistic).

"One of the wonders of humanity is that two people can look at something and see very different things, it's all a matter of perspective."

3. We have nothing to be ashamed of.

"Why am I telling the world that my kid has autism? Quite simply because there is no shame in having a child on the autistic spectrum," writes Reneé Davis.

"P's condition hasn't been caused by anything that anyone has done, or could have done differently.

"There will be no guilt. There will be no apologising.

"Attitudes will only change once people start talking about this stuff out in the open."

SEE ALSO:

This Is What It's Like To Experience Sensory Overload

Why These Women Embrace Their Autism Diagnoses - And They Wish You Would Too

I Stand Quietly: A Letter to My Daughter and to Everybody

4. My child does not suffer with autism.

"I very much dislike the word 'suffer' and its association to individuals on the spectrum," writes Jo Worgan.

"This conjures up images of bleakness and more importantly I feel creates a link to the medical model, making autism appear as a disease which it is not.

"Autism is a neurological and developmental 'disorder' in which it is all persuasive. Therefore, yes it is disabling, but it is not a disease.

"Autism is entwined into an individual's life but this does not equate to suffering. It is simply a different way of life.

"My little boy is on the autistic spectrum and although I cannot truly speak for him as only he knows how he feels, I do feel that he is a happy, energetic and fun-loving little boy.

"We have our daily challenges it is true, but we adapt and make changes, we enjoy life. He is a little boy who is on the autistic spectrum; he is not an 'autism sufferer'.

"Children on the autism spectrum when all said and done are still children, they play, laugh and have fun just as any other child."

5. Something my child DOES suffer from is bullying.

"Trying to protect a child with special needs from being bullied is like trying to stop ice melting in the desert," writes Kathy Lette.

"There were calls to the school, meetings, promises of closer scrutiny in the playground. But basically, when it comes to defeating bullying - particularly when your child is an obvious target - a parent might as well be standing up to Voldermort with a butter knife."

According to the National Autistic Society over 40% of children with autism have been bullied at school.

6. When you see my child expressing anger, rather than stare, try a smile.

"We all have those desperate situations as parents, regardless of whether your child is impaired or not. Those moments when you think, "what the fuck am I doing? I have no idea what to do next," writes Nicole Thomas.

"You know you'll get through it. You always do, but that bit of recognition speaks volumes and makes it feel okay. A smile is really all it takes to make things feel a little better." writes Nicole Thomas.

7. Children with autism are individuals, so generalisations like 'children with autism lack empathy' simply aren't true.

"[My daughter is] incredibly empathetic, but you may not realise it as she feels her own and others' emotions so deeply she can't bear it, and so sometimes she has to just shut down. Forget about a hug," writes Jill Finch.

"She is also desperately trying to come to terms with having a hidden disability that few people can understand.

"This is just one story among thousands of different stories of autism, not everyone is like Rainman or like my daughter."

8. Behind every child with autism there's a parent with "ninja skills".

"I have the ability to predict a strike and intercept with lightening precision, 86% of the time." writes Nicole Thomas. "Not only could I catch a fly with a pair of chopsticks, I could also put a jumper on it, get a pair of trousers on, not bother with shoes and get it strapped into a car seat all whilst blocking blows to the face and keeping a calm demeanour."

Ariel Skelley via Getty Images
"The boy is still the boy. He hasn't changed." (photo posed by models)

 9. We don’t have the answers.

"It's hard to express how difficult it can be when your child is diagnosed with something you have no knowledge of - there just simply isn't enough information out there for parents and the fear of the unknown can be overwhelming," writes Sadia Nakimera.

"I decided to educate myself, not about autism, but about Jayden. I needed to look beyond his autism and concentrate on Jayden as a person, not his disability. However, it was hard to find out how to do this."

10. It's a myth that all autistic children are antisocial - if anything, it is the children who avoid them who are being antisocial.

"A big misconception with autistic children is that they don't like being in social situations," writes Kerry Gibb. "They often would love to socialise with friends they just find it harder.

"Maybe your child could grow up to be the one to make this easier for them. Let your child be that one person who makes a difference.

"I am urging you as parents to look beyond what you may initially see in a child. Look beyond what your child is telling you about them.

"Lead your child by example and teach them that not all of us are the same and they should accept peoples different ways and embrace them for their individuality."

11. Autism is NOT ‘just an excuse for naughty children’.

"I first heard the words, 'autism is an excuse for naughty children' a year ago and I honestly thought that I would never hear them again, that this was just a one off ignorant comment made by an uneducated and 'nasty' person, but how wrong was I?" writes Jo Worgan.

"I am surrounded by people who know and understand Tom, so it is always a shock to the system when comments are made like this.

"It was upsetting because she questioned my ability as a parent, and as a parent of a special needs child I constantly question myself, I am not the confident and self assured mother that many people think I am, I too am vulnerable.

"Secondly, and more importantly in my eyes, her insult was aimed at Tom, whom she has no understanding or knowledge of, she judged him without knowing him."

12. If you are not a parent of an autistic child, please don't try to tell me about 'all' autistic children.

"There is still very little understanding of autism and when it is mentioned, people often know a friend of a friend whose child has autism," writes Hannah-Jane Miles.

"The mythical autistic child is often very 'naughty' and these horror stories can be hard to listen to on a regular basis.

"It is much like being subjected to strangers' birth stories once you are noticeably pregnant."

13. Yes some days are tough, so we need support.

"Sometimes the scars that autism leaves behind are visible. When the pinching has been so relentless we go to bed with patches of red raw, or bruised skin," writes Reneé Davis.

"When quick decisions made in pure anger actually draw blood. To big heads and small ones.

"My biggest fears are for the invisible scars that we'll be left with. Memories of traumatic days when the screaming and hitting and pushing and throwing and name calling has reduced some or all of us to tears.

"These invisible scars are a bit like my daughter's autism itself. Unnoticeable to most. Being 'high functioning' she has learnt to mask her true self when she has to, but it all comes out at home, where she feels safe to express her feelings."

14. One phrase I never want to hear again is: 'But he seems so normal'.

"Did my son seem 'normal' to you in the 10 minutes you spent with him? Well, that's nice, because he is normal... he's a sweet, normal, beautiful boy with autism," writes Lauren Casper.

"If you're trying to tell me that you didn't notice any signs of autism in your limited experience with him, that's OK, too. Please keep in mind that Mareto has good days and bad days, and sometimes he has good hours and bad hours.

"But if what you're really trying to tell me is that you don't think he has autism, then please consider how hurtful that might be to us, his parents.

"Please consider how that might invalidate all our efforts, all our battles and all our triumphs.

"What you are really implying is that we've wasted all of our time for the last 2 1/2 years because he's just 'normal'."

15. Having a child with autism is life changing - and that can be a good thing.

"It's important parents realise the new world that a child with a disability can give to you. You see the world differently and in a way you never could have imagined," writes Sadia Nakimera.

"The rewards are immense and I wouldn't change a thing."

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