This is the first post in a brand new blog category – Autism! It’s been over 18 months since our son was diagnosed with Autistic Spectrum Disorder (ASD) and I think we are ready to share a bit of our journey with you all. I have so much to say and so many ideas of what I think will be helpful, but to begin, we’re going to get really practical and give some tips that should help you to support a parent who’s child has an ASD diagnosis.
It’s very likely you know several parents in this situation – maybe you are an ASD parent yourself! If so, please feel free to add other suggestions in the comment box below. Quite often it can be confusing knowing what to say or how to talk about ASD if you’ve never had it effect your own family or friends. Even if you have limited knowledge of ASD, there are still things you can do to help – and there are things you can do that are harmful, so I’m going to share some things that have helped us, to steer you in the right direction.
Firstly, if you are going to stare, do it on purpose – with a smile. For example, have you ever seen a child with autism or similar condition, have a ‘meltdown’ in the supermarket or in the street? It’s a very natural reaction to turn around and look at the noise or commotion, we all do it! There is nothing wrong with looking and as an ASD parent I do not take offence, but when we do it hurriedly and with a firm expression we are unknowingly making the parent or carer feel under pressure. Just this morning, I was in the doctors waiting room with my little man and he was shouting and giggling loudly – in a great mood but his inability to understand social situations means that he doesn’t understand how to control his volume. He also struggles when waiting for things, as many ASD children do, so medical appointments are a very stressful (and unfortunately regular) part of life for us. The receptionist behind the desk couldn’t stop looking every time he made a noise – I don’t blame her, it must a have been distracting, so this did not offend me. The problem came from the firm expression and the fact she looked away every time I looked at her.
A simple smile is all it would have taken to give me a little reassurance that she wasn’t judging us. Next time you see a child struggling in public and a parent or carer is doing their best to work through the situation, be sure to look and smile or nod – that anonymous act of non-verbal support could make all the difference. Don’t see the challenging behaviour as something to be ignored, or given privacy. See it as something to be acknowledged and admire the parent who is trying hard help their child. You may look on the situation as a burden, but that burden is quite often the parent’s greatest blessing.
Secondly, Ask, never assume! ASD is a neurological disorder and the symptoms vary from person to person. Due to the wide spectrum it would be unwise to assume that it effects every person in the same way, likewise we should not assume that something that helps one person will help another. One of the greatest challenges ASD parents face is trying to explain to well-intended but ill-informed people that certain foods/toys/equipment are not suitable for their child. For example, some children with autism need night-lights to help them sleep, because of how the ASD effects them. However, my child needs complete darkness. Other children with ASD benefit from using a trampoline to regulate their bodies, but my child cannot use this for regulation as prolonged use causes his sensory feedback to be too elevated.
Never be tempted to start imparting ASD wisdom unless you are a medical professional with ASD training. Instead of making suggestions, try asking questions to help your understanding. I would much rather someone asks about ASD and how it effects my child, rather than ignore him or make suggestions of what I could be doing. When you ask good questions it is not nosey or inappropriate. If a family with an ASD child is in your life, whether it be through family, church, school, leisure activities or a neighbour, it is always best to ask questions. It shows you’re interested and gives the parent a voice to control the discussion around their child. Here are some examples – obviously you need to tailor your enquiries as is appropriate to your relationship to the parent (ie. if you’re just chatting to a stranger on the bus maybe don’t get too personal)
- How long has he had a diagnosis?
- Does it effect his sleep?
- What sorts of things does he struggle with?
- Do you have support from the health trust or charities?
- What sorts of activities does he enjoy?
- Is there anything we can do to help your family?
These are just general questions that could start a discussion. If you’re thinking you’d like to help more practically, perhaps if you already have a close relationship with a family, there are other enquiries you could make to offer practical support. I’ll discuss those in a future blog post.
Thirdly, Avoid Pity! Parents with an ASD child do not need pity or sympathy. It is actually one of the worst things you can do. Many times we have heard “our hearts go out to you”, “I don’t know how you do it”, “It must be so hard”, “I couldn’t cope with that” etc etc etc
I know your heart may be in the right place when you say these things, but your words are not. The reason being that when you express these sorts of sentiments you are suggesting that the child is a burden or a negative aspect of the parents life. You are ignoring the wonderful blessing this child is by only focusing on the challenges the child presents. I can assure you that the parent is already aware of the hardship of raising a child with a disability – they do not need it affirmed by other people. However, what you could say is
- You’re doing a great job
- There are no better parents more suited for this child
- The Lord will honour all the love you give to your child
- I admire how you raise your children
- You’re child is so obviously loved
- This child is a blessing to our family/school/church etc
Hopefully this is helpful to someone. If there are other topics you’d like to see discussed please get in touch, I’d love to hear from you!