What 'not to' and 'what to' say to an Autism Mum
Updated: Sep 30, 2018
Being a mother of children with autism sometimes means I am operating on very little energy, strength, sleep and grace. I know people generally mean well and want to help or empathise but sometimes in the back of my mind, I'm thinking - did you really say that aloud?
Yes I'm a christian and I do try to be graceful to others but please think about the comments you make, even those said with the greatest of intention can hurt. So I've put together a list of comments I've experienced as a mother with autistic children:
1. 'I couldn't do what you do'
Please understand - I do not have a choice. I love and care for my child just as any good parent does. Social Services are not waiting inthe background to swoop up my child, nor is anyone else. There is not an alternative. I am now sat here thinking, you think its perfectly okay to walk out of your child's life when it gets tough for you - regardless of how tough it is for your child and I imagine this is not what you meant. I do it, but it comes at a price.
Instead perhaps say - 'wow this is really tough, keep going you are doing a great job, I admire your patience / perseverance / strength / wisdom/ parenting skills'
2. 'God doesn't give you any more than you can handle'
Really? I don't think its wise to say this unless you want God to test you on it. I believe God does push me to my limits so that I can rely on Him, solely - time and time again. It has been a life lesson and using this as a throw away comment just for you to justify what is happening to make yourself feel better, is not what this scripture is about.
If the relationship is there, ask 'how is your faith?' 'can I pray for you, that God will meet your needs?'
3. 'My child does that too'
Please don't be flippant about our child's new tic, food refusal, seeking, defensive, quirks etc. Yes your child may do one thing similar or do one of these behaviours but it is not the same thing as experiencing this constantly and the worry of what it will lead too compared to a typical child. If you genuinely think your child is showing signs of autism I'm happy to talk to you about this but if you're saying this to try and reassure me that my child is fine, please don't. Especially for those early on in the diagnosis process, this is a time of such confusion and doubt. I have accepted my child's diagnosis and it is okay. Please accept it too.
Perhaps try 'my child has done this a couple of times too, how do you handle this?' or 'this sounds just like my child, I'm worried they are showing signs of autism, what can I do?'
Its important to note that a parent of a child with autism is not the same as a qualified doctor, but as they've been on this journey they can help to steer you in the right direction.
4. 'He's not that bad'
Yes right now we are having a good day, yes I am so thankful I can have a conversation with my son and he has learned to behave correctly in this current social setting but its not always like this. We have worked so hard and he has had early intervention to help him. You are seeing the picture right now rather than the struggles that go on behind closed doors. Doing well academically in a safe setting is not the same as living and holding down a job in the real world. It does not mean that the war is over because of the snap shot you see right now, there will be other battles. I am not being negative, just realistic.
Perhaps say 'all the hard work is paying off, he looks so settled/calm/happy'
5. 'Have you tried xyz? it cured (insert name)'s autism'
As an autism mum I do my research, if there was a cure I would know - my doctor would know. In fact, it would be in all the media and everyone would know - it would be a big deal. This comment can actually be dangerous (especially dependant on what is being said) and give false hope to people. Frazzled people could end up spending money they don't have in the hope that this new vitamin, oil or whatever it is, may work because of a random article someone read or sometimes not even read - just posted online or because their colleagues, aunts, neighbours cousin used it. I understand that you may want to offer help but this is not the way. Unfortunately there are people and companies that prey on vulnerable frazzled people - please don't support them. Having said that, I do believe that different therapies can help reduce difficulties and struggles but there is no cure.
Perhaps ask 'what are your thoughts on complementary medicines to help with autism?'
6. 'Let's pray and fast about this, God will heal him'
I have prayed, others have prayed too. He is not 'healed' because of mine or his sin or due to lack of faith. Yes I do believe God heals, I know and have seen this in my life. I do believe God is almighty and all powerful and I believe one day my son will be healed but it will most likely be when he is in eternity with God. My child has a life long developmental brain disorder. Whilst he has struggles, he also has an amazing memory and abilities. Not all of autism is negative. We have accepted his diagnosis and most importantly, my child does not want healing from this - autism is a part of who he is. I would love for him not to have the struggles, the anxiety and issues that he faces but it is part of the whole package.
Instead try 'how can I pray for you all?'
7. 'But you'll be entitled to help now'
A diagnosis is a great step forward in understanding why your child is, the way they are. There is a lot of information on websites and books published to help but it takes time to research which books and sites to read/visit. Help does not automatically come from anywhere - it is a fight to justify the services/schooling/care needed for your child. It may appear obvious on the outside but you still have to fight to the system to get any help. Benefits and blue badges are not handed out freely or automatically. Even when you finally have financial help or a blue badge, you can then be subject to angry judgement from passers by on whether you deserve such help - as autism is an 'invisible' disability and you can't always tell from one look. People can judge you as being benefit fraud or using a blue badge illegally. In many ways this can be just the beginning.
If you're genuinely interested perhaps ask 'what help are you looking for? maybe I could help research that with you?'' Don't assume that help, in any form, automatically arrives with a diagnosis.
8. 'There was none of this around in my day'
Oh dear, sorry to shatter your bubble but yes there was. The population has increased so therefore there are more people around, hence more diagnosis are made. The advances of media & technology now means knowledge is spread faster. Diagnosis has improved and more people are now generally aware of autism, compared to the past.
Not that long ago, disability was seen as shameful and needed to be hidden. In my own family, my grandfathers sister was taken away from the family, at a very young age (3), to live in a home, as she had epilepsy. He had forgotten all about her until a family tree search revealed his hidden sister. She lived and died in this home at age 75. Its so sad that she was written off at such a young age, I hope this would not happen today. Adults today are receiving diagnosis' that could have been made when they were younger but instead their difficulties would have been ignored or worse - labelled as something unpleasant. There are more diagnosis now but it doesn't mean that it wasn't around in the past.
Perhaps instead say 'there is so much more knowledge around to help children now, compared to how it was in the past'.
9. 'You're not hard enough on him' or 'hit him harder, then he'll learn'
My child is not typical and therefore does not react in typical ways. In fact this response to the above would actually make the situation ten times worse. Putting fear into someone is not the same as learning to behave. If he sees that its okay to hit out when you're angry, he will do the same, which is the opposite of what I want to teach him. He does not have a sense of hierarchy typical children would have picked up on e.g. I'm the adult and you're the child, therefore you do as I say - This would make no sense to him, just because you're older would not mean you are more likely to be right and know whats best for him, compared to himself.
I have been on courses (lots of them) and read books about how best to handle my child's undesirable behaviours. This does not make me a perfect parent but it gives me knowledge and I am still learning. I have also lived as his parent for the past x years and I know my children. I find this comment insulting, I cannot hit the autism out of my child. I don't believe in hitting any child as a form of discipline, at all. The guidelines in this country for corporal discipline are here. The way I discipline my child may seem strange or ineffective to you but his behaviours are not coming from the same place as a typical child. His reasoning and understanding is different and therefore I use a different approach, tailored to his needs and abilities. He is learning right from wrong and he has progressed strides in this area, as he has matured.
Instead, I would suggest keep comments like this to yourself and maybe less judgement. Try the observe and learn approach. If you want to know about discipline ask 'How do you discipline a child with autism?'
10. 'Does this mean you gave him the MMR vaccine?' Or any other comment where by you are implying that my child's disability is my fault.
For the record, I did give all my children the MMR as I believe (and still do) in vaccinations and not all my children are autistic. There is no answer as to why some of my children have autism, there are theories and I can see autistic traits that run in our families from both sides. Asking a question that indirectly blames me or a vaccine, what are you hoping to achieve? validation for your own parenting decisions or just trying to put someone else down? Whatever the answer to what causes autism is, it does not change that he has autism. No one can go back in time but we can learn for future generations, so I think it is important to find out what causes autism.
There is nothing wrong with being curious as to why a child has autism so perhaps ask 'what do you think causes autism?'
I have heard these comments and in some of those moments I have taken them personally - that I'm not good enough, even though I'm exhausted from trying so hard to do my best - I'm failing and you've just confirmed it too. On the outside I've just smiled and nodded through them, if I was having a braver day, perhaps I tried to defend myself. In reality I should not have to justify my sons autism to anyone. I know sometimes they were said with well intentions but this has made me realise there is still a long way to go in people actually understanding autism.
Yes, more people are aware but that doesn't equate to understanding. It is a vast spectrum. I am stronger now and these comments don't hit me personally, as they once did. When you are run ragged and this is the first grown up conversation you've had in a while and your met with the above comments, it can hit you. It can make you not want to go out, its hard enough as it is.
Whether I want to be or not, I am an ambassador of my child's disability. I live it everyday, whether I'm happy or sad, healthy or ill, whether its a Tuesday or Christmas Day, autism doesn't take a day off. I can tell the world what life is like for my autistic children, in the hope to increase understanding and acceptance but that is not the same as having to justify everything they do. I do not have problems answering questions about autism but like most people I don't like comments that have unhelpful undertones.
What comments have you experienced?
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