What to Never Say to a Parent of a Child with Autism

It’s Autism Awareness Day today.

I spent a long time wondering how I could contribute to the cause.  Then I thought, there’s a reason that they have Autism Awareness Week – nobody bloody understands what Autism is.

This leads to many comments being made all the time to parents like myself. Not comments that are meant to hurt or offend – most people in this world are not trying to be cruel! People simply don’t understand what Autism is and I totally get that … because its still a constant education for us too!

So to kick off Autism Awareness Week I’m starting with the common phrases I have heard over the years, that can be hard to brush off.

I know that NOBODY has bad intentions when they say these things!!!  People feel awkward and don’t know what to say.

So here’s my guide on what NOT to say, how you can be a bit more sensitive and self-aware, and what you can do to help.

I think my child is a little bit Autistic or ‘on the spectrum’

The word spectrum is a double edged sword. Whilst it has helped to explain the vast diffferences between people with the condition, it has also opened the floodgates to hoards of parents who think they’re child is ‘a little bit autistic’.

Trust me when I say, you WOULD have realised if your child had Autism and you WOULD have done something about it.  Unlike what many people believe, in young children, Autism is that apparent. It is NOT subtle, like some people think it is.  Even in girls.

Read more about the symptoms of Autism we noticed in our daughter before the age of 2 here.

Kids are wild, quirky, awkward, loud, inappropriate, moody, they’re up, they’re down and they have boundless energy.  That does not mean they have Autism. That means they’re kids. And yes they are absolutely all different and fabulous (and challenging) in their own ways!

Also don’t’ think that kids with Autism aren’t all these things too!  They are also wild, quirky, awkward, loud, inappropriate, moody, they’re up, they’re down and they have boundless energy.  And yes they are absolutely all different and fabulous (and challenging) in their own ways!  They are just kids too. These traits do not mean Autism 🙂 These are kids!

If you’re child has Autism there WOULD have been developmental delays that would have been flagged up – in early primary school, if not before. More that 1 person will notice that your child behaves differently and the developmental delays make it very difficult to miss these days.

The issue is that ADHD, sensory processing disorder, speech delay, sleep issues, hyperactivity, gut issues, social communication challenges, behavioural problems and other symptoms that all relate to Autism are rife in children these days – for a variety of reasons! However this does not always mean Autism. With Autism you are having ALL of these, ALL the time because the part of the brain that controls these areas behaves differently to a neurotypical brain. They don’t come and go in phases. However there IS lots you can do to help (again more on this later in the week!) so please don’t feel hopeless.

So unless you are actively seeking help for your child, perhaps its not the best thing to say out loud. If you genuinely DO have concerns seek help now (more on this later this week!)

Get to grips with what the condition means, before you either open your mouth or start going down that road. I spent months understanding the condition so I could speak to doctors and experts in an educated manner – its too important and complex an issue to not!

In addition, it really doesn’t help a parent of Autism when another parent makes this comment about their child, who quite simply, is just being a kid. It makes us feel that nobody understands us (because they generally don’t!)

So what is Autism?   Well, everyone seems to have a different description but I think most people would agree with this from Autism Speaks.

Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication.

… it is often accompanied by sensory sensitivities and medical issues such as gastrointestinal (GI) disorders, seizures or sleep disorders, as well as mental health challenges such as anxiety, depression and attention issues.

Indicators of autism usually appear by age 2 or 3. Some associated development delays can appear even earlier, and often, it can be diagnosed as early as 18 months. Research shows that early intervention leads to positive outcomes later in life for people with autism.

My kid has tantrums too.  Don’t Worry About It.

Again, we know all kids have tantrums.  We are not talking about tantrums here.  A tantrum is an act out of sheer frustration because a kid isn’t getting his or her own way.  It comes part and parcel of being a parent.  It’s pretty embarrassing but as a parent you just shrug your shoulders and move on.  We know all about this having had 2 little girls, and yes kids with Autism can also have tantrums.

However a meltdown or ‘extinction burst’ that a child with Autism has is completely different.  Firstly it can happen out of nowhere and you have absolutely no idea what’s going on.  There were no clues, everything was fine, then it wasn’t.  There was no conversation.  You have to turn detective.  What could it be?  Could it be sensory?  Are the lights too bright?  Too Loud?  Are they in pain?  Are they hungry?  Is a toy in the wrong place?  Is something different in this room that usual?

I’ll give you an example.  The other day I was walking Sienna down the corridor at pre-school like I do every single weekday.  She stopped, frozen, agitated.   Rigid.  She started to shout ‘No! No!’ really loudly.  She covered her ears.  She dropped to the floor.  All the time whilst I am searching wildly around completely complexed as to what is happening.  This went on for a few minutes until she finally crawled towards the wall and started removing all the picture frames off the wall with the teachers pictures in them.  As I was about to start to tell her to ‘stop that’ as any parent would, it then hit me!  The picture frames were in a pattern of black, white, black white, only at the end, they had gotten mixed up and were white, white.  The sequence was wrong.

The other day whilst shopping, a carrier bag blew away and we couldn’t get it back. This plagued her for days and now she gets upset when we go to that shop.

The hurtful bit for the parent here is not embarrassment. We couldn’t care less what people around us are thinking.  It’s watching our child in complete and utter distress and not having a bloody clue what to do about it.  It’s a feeling of total and utter helplessness.  Please do not compare this to your kid having a so-called ‘meltdown’ in the middle of Tesco because they wanted a Kinder Egg and you said no.

It has literally taken me years to hone my skills in searching for explanations to account for her meltdowns.  I’ve become better than Columbo at solving these mysteries and through them, we have learned so much about her that has helped us all dramatically.

Whilst this looks ‘naughty’ to other people, or a child ‘out of control’; it simply boils down to one thing.   She simply can not find a way to tell me or anyone, what has upset her, and the biggest question of all that I hope one day I find the answer to….WHY it upsets her.

If you are a parent going through this stage I urge you to look for clues!!!!  Log them, write it all down.  Find the common denominators because I guarantee you, they are there, and once you know them you will be able to help your child much more.

Everyone is on the Spectrum a Bit

No actually they are not.  Saying this only fuels the complete lack of understanding that people with Autism have to face in our society.

What you mean is that everyone is different.  Everyone has a different personality.   People ARE IN FACT DIFFERENT.

Does everyone have a brain injury that can prevent them from communicating with other people, delay their speech or motor skills, and make them completely hyper or hypo sensitive to things they feel, see, hear, touch, smell or taste?

Do you just do something once, eg walk around the park a certain way, and then HAVE to do it each and every time the exact same way or it feels like your world is collapsing? Im guessing not.

If you are a person who says this, please take the time and honour anybody with Autism by getting to grips with what the condition is and how it affects them. We are not all on the spectrum at all. We’re all just different. 2 totally separate things.

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Ahh, Yes That Will be Her Autism

So my child at 4 is incredible at maths.  She can do 100 piece jigsaws.  She could read (we think) at the age of 2.

She might sometimes like things orderly.  She might love to jump up and down on a trampoline.

But instead of saying ‘it’s her Autism’, can we please just say “Wow, that is just Sienna.  Isn’t she amazing.”  Lets give her the credit she deserves rather simply putting it down to a condition she has.  Actually it’s her individual brilliance, and we couldn’t be prouder of her.

I Know Exactly What You’re Going Through

I really don’t’ mean to be rude here, but actually, unless you’re an autism parent or have Autism yourself, you have NO IDEA what our family has been through, or on certain days, go through.  Just as we probably don’t have any idea what it is like to be you.

You have no clue how life looks for us.  No idea how our child finds things so challenging that they bring her to tears through absolute frustration.  You have no idea what it is to look at your child, who wants nothing more than to make a friend, or join in with her cousins or peers, but has no idea how to do that.  To know that outwardly she looks aloof and disinterested, when really she is just dying to be included. To appear as though she doesn’t like games when really she wants to PLAY!!

No idea what its like to watch a 2 year old refuse to draw or colour in because they cant do it perfectly – so she wont try! (We have gotten over this by the way after 2 years of gentle daily therapy)

No idea of how it feels when they are 2 years old to worry about what their future holds.  Will she ever be able to talk?  Will she ever be able to look at me? Will we ever be able to go on holiday as a family?  Will I ever be able to cope? Will I ever know how she sees the world?

For us, these fears have subsided over the years as we’ve educated ourselves and really taken the time to get to know all about our daughter.  We’ve also invested in education to be able to help her in as many ways as we can.  The things above don’t worry us at all anymore, but they once did. Gravely.

Don’t ever take for granted that your child can tell you they are sad / happy and tell you why.  Don’t’ take for granted that your child can express themselves.  And just like you wouldn’t tell a mother or father of a visible need / disability (or however you want to term it) that you know what they are going through, please don’t assume that just because you can’t see Autism, that it doesn’t exist.

I Know ‘One’ In My Kid’s Class.

They have a name you know.  Please don’t refer to any child as an ‘it’ or ‘they’.  I even know teachers in specialist autism schools who have referred to the children in their class like this…”they all…..”.  It’s so incredibly demeaning.

Instead: Take the time to learn that child’s name rather than calling them the ‘autistic kid’.  Take time to learn about what they’re great at, who they are and encourage your child to do the same.  Think about the lessons you are teaching your child by talking about another human like they have no feelings or other qualities outside of their condition.

And whilst you’re there, take a moment to learn their parent’s name too, because believe me, nursery / pre-school / school gates can be a pretty lonely place if you are having a VERY different experience to all the other mums stood there.

Will They Grow Out of It ?

This is still such a common misconception.  Please don’t make me sit here and teach you all about Autism.  I’m tired.

Instead get on Google and read some blogs from people with Autism.

Don’t Worry, It Could Be Worse

I always think this is a such a useless thing to say to anybody who is going through something they find difficult.

If you know someone who has a child who has just been diagnosed or they believe that their child might have Autism, please don’t say this to them.

Please try to understand why they are so fearful.  Why they are afraid for their child’s future.  Why they are afraid for their own future?

Some children with Autism can grow up to never be able to talk.  Some will never be able to live independently.  Some may never be able to go to the toilet by themselves.  However others lead a hugely varied life! Thats why they call it a spectrum. But as parents of young kids, these are the things we’re worrying about. We don’t know. Please don’t even hint that you would not worry about something like that if it was your child going through the same thing.

Under the age of 5, it can be difficult to see how your child might develop.  You are hoping, like any parent, that your child will lead a independent, healthy, happy life.  And I truly believe that this is possible for every person.  But a person with this level of challenge in their life needs a lot of help to do this. The responsibility can feel huge.

Please understand these are the things we are worrying about when we are going through this process.  Please understand this is why we sometimes feel sad, we feel loss of a future for our child – it feels frightening as we don’t understand WHY this has happened, what caused it OR what we can do to help our child.

It is daunting, overwhelming, all-consuming, and sometimes just day to day, your life can be incredibly physically demanding, stressful and highly emotional.

It can be REALLY hard to see how everyone else’s child is developing, growing, talking, developing interests, playing, interacting; and your child isn’t. (Although again please note huge progress can be made with the right help for your child! More on this later!)

It can be hard whilst all the other mums sip coffee on play-dates whilst you can’t leave your child unattended.  It can be hard to explain to a parent that you don’t think your child might be able to come to their kid’s party as it might all be a bit overwhelming from a sensory perspective.

It can be hard to watch as people ignore your child, because they think your child is disinterested or wants to be ‘alone’, when really they’d just love that person to go over with positive energy and light them up.

It can feel overwhelming. It can feel like its all on you.

So please, please don’t tell a parent ‘Don’t worry’ it could be worse’.  It could be worse, but this still isn’t a helpful thing to say.

Instead say ‘tell me what you’re going through emotionally.  I want to understand and I want to be there for you.’

Have You Tried….?

When you say this to a parent of a child with Autism, who literally spends their life every single day trying to understand their child and how they can help them, it can feel like you’re saying ‘You’re not doing a very good job.’

Instead try ‘Is there anything I can do to support you?  I’m here for you. I’m here to listen.

She’ll Talk When She’s Ready

Nothing is more insulting that when other parents poo-poo your concerns over your child. I remember so many people doing this to me.

I once caught someone rolling their eyes when I was nearly in tears trying to explain why I was finding life as a mum so difficult.  They flippantly told me ‘she’ll talk when she’s ready’.

Funny how they’ve been nowhere around in the last 5 years, and are not still saying that now she’s nearly 5, and still struggles with language.  Funny how those people were nowhere to be found whilst we were coming to terms with the condition.

Try “I can understand why you are so concerned.  Would you like me to help you to find someone who might be able to help you understand what’s going on? You will get there.  You will find answers.”

More posts to come this week on a much more positive note – what you can do to help!!!! Check out my facebook page for more info.

As always, message me, ask any questions you want and lets get this discussion going!!!

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