How to help a child with autism

Because even if you're aware of autism, accept autism and understand autism, most autistic kids need extra help to navigate childhood successfully. And most parents need help too. Maybe some autism parents are able to instinctively parent their child. Most of us cannot.

But to work out how to help autistic* kids, you first need to ask "what is autism?" And there are as many answers to that question, as there are autism 'experts'.

I would see it as a neurological difference that means that autistic people experience the world very differently and that can make it a frightening, unpredictable, illogical and overwhelming place. Lights really can be blinding and sounds deafening, people confusing and danger seemingly around every corner.


Of course, this is what I think right now - ask me again in a year and I could tell you something different. And hopefully, less negative too.

I don't want autism to be like this, and I often read about autistic children who are overcoming their difficulties and doing really well in school or the adult world, and it got me wondering about what does help a child with autism to 'succeed'?

Early intervention?

Parents who are consistent and united?

Prompt diagnosis?

Parents who have autism themselves?

Parents who have enough free time to really concentrate on the kid with autism?

Support from family and respite so that families and the child with autism can get regular breaks?

Schools that really understand?

Therapists who are permanent?

Even as I write that list I'm listening for the sounds of hollow laughs from autism families whose experiences have been completely different. With endless battles, lack of support, family fights, isolation and lack of understanding and interest.

What else would make a difference?

Information : Every year I see parents ask the same questions in autism forums. Because the answers are not out there. The books we are told to read don't seem to answer our most pressing questions. We need the truth and real practical advice when there is a crisis, like the helpline proposed by Irish Autism Action.

Services : Appropriate services make a huge difference to children and their life chances. Watching a child with autism blossom will help their families too, reducing frustration and even depression and divorce rates.

School : The school needs to fit the child. Not vice versa. How this can be achieved within a school setting when every child is different, I am not sure, but right now some children have access to  excellent autism education, and some do not. Individual Education Plans for children with additional needs are not compulsory in Ireland, so there may be no year on year comparison of progress and no agreed accommodations to help them succeed.

Accommodations : Wouldn't it be great if it wasn't just cinemas that have autism days? Because as well as encouraging people not to judge a child having a meltdown in a crowded supermarket, wouldn't it be better if there were days or times when the environment could be quieter, with less people, dimmer lighting and calming music? And perhaps no meltdowns at all?

Parenting : Ultimately I think it's about finding the right parenting strategy for your individual child, and finding it early, that is the key. And sometimes that is down to luck. It's also about having the resources - time, money and emotional - to be able to implement it. Not to turn your child into someone they are not, but to help them be the best they can be, and happy and fulfilled in their adult life.

What goes so wrong for so many with autism? I understand that the way the world operates right now disables so many people. So how do we change the world and make it inclusive for all?

I don't thing that there is a magic formula to solve everything. I'm trying to do my bit, even if what I write is just a tiny pebble cast into the autism awareness ocean. I'm hoping that every bit of awareness helps create waves, however small, that may one day result in every autistic child gets everything they need. Let's hope so.

Happy World Autism Awareness Day!


*I'm using 'child with autism' and 'autistic kids' interchangeably in this post because I'm in favour of both descriptions.

Note: Recently I was told that my posts about autism are always on the negative side, and I am sorry about that, but I guess that this family's experience of autism has not been very positive so far. I'm hoping that will change though!

16 comments:

  1. I love your idea for supermarkets having a quiet time once a week!

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  2. I wouldn't say your autism posts are negative, they are informative. I agree with all you've put - nobody has all the answers, or the resources, to make everything perfect. Money isn't always the answer; attitudes generally are. But how can any of us be sure we are doing the right thing by our children? Happy Autism Awareness Day to you too :) x

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    1. Very true!

      Good wishes returned and thank you from all autism parents for the huge effort that you are making to raise awareness this month x

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  3. I don't think you should have to apologise for the tone of your posts- although I personally don't think they seem overly negative. You are telling your story not that of every family with autism and you should tell it as you see fit. Personally I prefer honesty. If, as a parent of a child with autism, all you can find online are stories about families embracing, accepting & celebrating their child's diagnosis, how does that help you navigate through the challenges and meltdowns that you are currently experiencing. H doesn't have autism, but one of the things I found hardest when trying to find similar experiences online- was that I could t find anyone who admitted to be scared or to finding it difficult. I find it much more helpful to read that others are feeling the same things I am and then feel inspired to see them come out the other side as it were. I'm not sure I'm making much sense here- sorry.
    Anyway, I think your idea for the quiet supermarket would be brilliant. Xx

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    1. You're making great sense, and I would be exactly the same, I feel worse sometimes after reading about families who don't express any difficulties at all about living with autism. I always try to put in the positive where I can, because there are lots of them. But I also use my blog as somewhere to vent - sometimes I feel it's better to do it here rather than infect it directly on other people, if that makes sense xx

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  4. This might sound a bit strange after the post you wrote, but I actually feel quite lucky and privileged to be in Ireland with an autistic child. France is a thousand miles behind when it comes to diagnosis, treatment, support, school... 80% of autistic children don't go to school in France, some parents have to hire private SNAs for their children, now that's madness.
    I'm not saying Ireland is perfect either, but so far, apart from the late diagnosis (he was almost 6 when we got it), we have received very good services. I didn't know IEP weren't compulsory in Ireland, so I guess I'm lucky with the school he's going to. He's getting a lot of help and support from the teachers as well. But again, I also think that even if there are rough days, he's on the mild side of the spectrum, and it's probably a lot harder for other families.
    By the way, I think the cinema in Pavilions in Swords does screenings for autistic kids, and quiet times for supermarkets would be a great idea ;-)

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    1. You're absolutely right, I have heard worrying reports about how autism is treated in France, but there is still a lot of room for improvement soon. And yes quite a few cinemas have autism screenings, which is great :-)

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  5. Brilliant post Candi and what you say is spot on. I wish more places did have autism days .I love the fact how you write your posts of how it is and from the heart .

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  6. This is such an honest post! I like how you address each item and have an idea of things to make it better! I will be sharing this in my "Weekly Roundup"... Thank you so much! www.livingthediagnosis.com

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    1. Thanks so much for reading and commenting Vicky and I'd be very interested to see your weekly round up.

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  7. I'll tell you what helps autistic kids succeed. It's the desire to succeed. No one likes pursuing pointless goals. There's also nothing around to even try to help autistic kids cope with the onslaught of demands from their parents, teachers, therapists, tutors, and peers. It's the equivalent of performing a lifelong concert. I am a musician and know how tiring concerts are. As good as someone looks in concert mode, it's impossible to sustain concert mode for years on end. It leads to burnout and it's unhealthy. Why do you suppose no such resources exist?

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    1. Thank you for your valuable perspective, I wish more adults would provide actual practical advice for parents like me.

      I am now learning about demand avoidance and have greatly reduced the demands on my son, and life at home is more harmonious as a result. But that has consequences for the rest of us.

      On the desire to succeed, I guess it's about helping your child to find something that they care about enough to want to work for it?

      In terms of resources, I guess the answer is that helping autistic kids does not really fit into the corporate capitalist model that the world seems to be following.

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