Today I have a guest post from my friend Danielle. She writes about life with her two children, one of whom has autism. I’m always really moved by Danielle’s words and appreciate her willingness to answer questions, showing me a little of her world. Today she is sharing five things not to say to an autism parent – and some useful alternatives.
I do not speak for all autism parents. We are as diverse as any group of people and our opinions on many topics will differ widely. However, these are some of the things that I find difficult to respond to when friends and relatives say them – and some of the things I wish they would say instead.
- “All kids do that.”
I think this comes from a good place. People want to reassure and let others know that ultimately, kids are kids. And, of course they are. There is always more to unite us than to separate, in all walks of humanity. But, although a neurotypical child may struggle after a long day at school or dislike change or have a tantrum if you give them the wrong colour plate, it is not quite the same. The parent you are talking to has probably had a long and exhausting journey. They have probably had to fight to every ounce of support, for every appointment and every referral.
On top of that, if a child with autism always has the same plate and that routine is disrupted, it can have profound consequences. There may be a meltdown that lasts hours and hours – not minutes. It could mean that they are unable to function for the rest of the day, they might get physically violent through no fault of their own. If the child is verbal, they lose the ability to communicate for the rest of the day. When you say, “all kids do that”, the parent may feel like you are brushing aside the struggles they and their child face every day, that you are marginalising and minimising something that will affect their child’s life forever.
I know it must be so frustrating and if you want to just talk, I am listening. I may not have experienced exactly this myself, but I know parenting is hard enough at any time and if you just want an ear to offload your frustrations, I am always here to listen, even if I do not know how to help.
- “Have you tried gluten free/essential oils/ABA therapy….”
Some parents will have tried these things and found them useful. Other parents will be very vehemently against anything that seeks to ‘cure’ their child or make them conform to the behaviours that society expects. Chances are though, parents will know about these things and will have already formed an opinion.
What kind of support network do you have? Have you had any referrals for therapies? Do you find they help? What kinds of support helps you and your child most? Is there anything I/we can do to make things easier for them?
Again, it is perfectly understandable that people want to say something kind and comforting but struggle to know exactly what. I think this is what leads to people expressing sorrow. However, many parents will feel that autism is a fundamental part of their child. They love their child more than anything and it may feel, to them, like you are sorry for part of their child.
I do not know as much about autism as I would like to. Tell me about your child – what are their strengths and weaknesses? What kind of support do they need? What is their daily routine like?
- “Where do you think he/she gets it from?”
This is dangerous ground. It is very likely that autism is a result of a combination of genetic and environmental factors but many autism parents will be very wary of attributing ‘blame’, whether that is a genetic origin or something else. In addition, referring to autism as ‘it’ may not be helpful. Again, many autism parents and autistic individuals consider autism to be a fundamental part of their being – referring to autism as ‘it’ makes it sound very much like a disease and many will not feel this way.
I would probably steer clear of causes of autism as a topic, unless the parent brings it up. Instead, ask generally questions about their circumstances and journey. For example, you could ask about the diagnosis process, whether they found it a challenge, what they feel could be done to improve services for autistic people.
- “You are such an amazing mum. I couldn’t do it.”
Yes, you could. You absolutely, 100% could. I have heard people say things like “God only gives special children to special parents” or “God only gives you what you can handle.” I am not religious, but even if I were, these phrases would not ring true. All parents love their children. All parents become the parents their children need. Special needs parents follow a steep learning curve in order to understand and support their child. They do not always feel like they are successful, just like all parents. But they are no different to anyone else. We all do what we must because we love our children. You would too.
I am impressed by how much you have learned and how you have fought to get support for your child. I would love to learn more about this. If you ever feel lonely, call me and we can arrange to do something.
Ultimately, the very best things you can say are “I am always here to listen, even if I do not always have advice” and “Is there anything I can do to help support you and your child?” Make sure you invite their child and include them in things. Be understanding if they prioritise their child and cancel plans. Let go of any judgement of their child’s behaviour or their parenting skills.
Life as a special needs parent can be particularly lonely. If you seek to make a connection and learn more about the child and what the diagnosis means, most autism parents will welcome this wholeheartedly.
Danielle blogs at Someone’s Mum, where she writes about autism and family life.