It Takes Effort...

When I'm sitting there with my head in my hands as my child runs around having the mother of all meltdowns, I'm sure plenty of onlookers are giving me condescending looks and classifying me as yet another incompetent parent. You know, the type of person who says their kid has ADHD just to excuse their poor parenting skills.

But let me tell you something. If you had any idea what goes on behind the scenes, you might just think differently:

1. I've spent countless hours ferrying my child from one appointment to another. We have seen psychologists, paediatricians, speech and language therapists, occupational therapists, mental health counsellors and doctors. We go to a LOT of appointments.

2. I've had to be an advocate for my child at school, when the provision was poor, fighting his corner for him and attending IEP meetings to discuss his progress.

3. When school provision proved to be inadequate, I chose to home educate my child, putting in many hours helping him to learn skills that most people take for granted, such as self-care skills and how to cope in social situations. These lessons have to be repeated and reinforced many times.

4. Starting from scratch to build up the academic skills that the school failed to teach him, like times tables. It meant taking a completely different approach based on words and stories, but it finally paid off.

5. Attending courses based on parenting autism, such as the excellent Cygnet course, as well as groups run by the local parent partnership about issues like personal development and bullying.

6. Many hours spent online and in the library, researching autism and ADHD therapies and information.

7. Time spent ferrying him to social clubs and activities for kids with autism, so that he can develop practical and social skills.


So you can see that parenting autism is a full time job and requires a lot of care and dedication. Anyone else putting this much hard work into a project would receive praise and commendation, but autism parents often receive judgement and condemnation. People think that we are neglectful and permissive when they see our kids acting out. They don't realise how we go above and beyond the call of duty to ensure the best life possible for our children.

Stop Judging

When an autistic child is acting up in public, it is easy for others to judge. It is easy to think that a parent is ineffective, especially when the child shows no sign of physical disability and looks like a "normal" kid. I shudder to think what was going through people's minds as we walked through town yesterday.  I'm sure we look like we'd be great fodder for a channel 4 documentary about dysfunctional families.

So here are a few things I'd like to say to people who judge:

You are an ignorant bunch and should really educate yourselves about autism before you decide how we should "handle" it.

Firstly, many autistic kids have sensory difficulties which present a skewed view of the world. Lights can be intensely bright, sounds can be deafening, smells overpowering and tastes too strong. Something as simple as someone brushing past can feel like a punch in the arm. Clothing can feel scratchy and uncomfortable. Daily life is like being bombarded with a million sensations all at once. Imagine walking around with a fire engine siren blaring in your ear or a horrible cheesy smell in your nostrils that you can't shake off, whilst your clothes feel like sandpaper in your skin? Not very pleasant, is it?

Secondly, autistic kids can struggle to communicate. They know how they feel, but putting it calmly into words can be an issue. Replies can be rude, brusque and thoughtless, but the child may not understand what they have done or said to offend the other person. Kids with autism can lack empathy because they simply cannot comprehend how it feels to be in another person's shoes. This can lead to huge social difficulties and misunderstandings. Frustration at not being able to put something into words may spill over into physical actions, like hitting and banging.

Thirdly, autistic kids can feel anxious ALL of the time. You know how you feel when you are dreading something, or feeling like the next thing that happens will be the straw that breaks the camel's back? Well autistic kids can feel like that constantly. Having a high state of anxiety, even very simple things can tip them over the edge and cause them to freak out in public.

So now you know a bit more about autism. In a perfect world I wouldn't have to be explaining myself, but we live in a world full of ignorant folk and if I can enlighten just one of them then I have made life a little better for autistic kids and their parents everywhere.

Social Stories to Explain Manners

When I was at the recent Cygnet course, I learned about the "Theory of Mind", or idea that autistic people have difficulty understanding that other people have different feelings to them. My son has made some progress in this regard, as he previously believed that everyone had to think and feel the same as him, whereas now he does at least understand that others may have an opposing point of view.

However, yesterday he went to town with his nan and she was meeting a friend for coffee. The lady had bought my son a little present; a sticker book. My son didn't like the look of the book and told the lady that he didn't want it because it was rubbish.

When we talked about it later, he simply couldn't understand what he had done wrong, or why his reaction may have upset the other person.

In the end, I used some of his toys to enact a social story. I used two of his favourite characters; Sonic and Tails. I did a good version and a bad version of the story:

Bad Version:

Sonic: I am going to surprise Tails by giving him a nice present. He is going to be so excited. I've saved up lots of my money to buy it for him. Here he comes now. Hi Tails.

Tails: Hi Sonic.

Sonic: I've got a surprise for you. I saved up my money and bought you this present. It took me ages to find the right gift for you. I hope you love it.

Tails: UGH! What a horrible present! What a pile of rubbish! I don't want it. Yuk Yuk!

Sonic: (crying) that was really mean Tails, I bought it especially for you.

Good Version:

(Tails thinks to himself: I don't really like it, but I don't want to upset my friend.)

Tails: Thank you very much for the gift Sonic. It was really kind of you to think of me. You are my best friend.

Sonic: Thanks Tails. You are my best friend too.



My son immediately got the point and we also rehearsed what he should say if someone gives him a gift he doesn't like. With autism, you have to practice this sort of thing over and over again to get the point across. Never presume that an autistic child knows how to react appropriately in social situations, even if it seems like something that would be obvious to us.