This page collects all the responses I received in answer to the question ‘How has having a child with autism changed you as a person?’ It’s a pleasure and a privilege to be able to share such insightful and thoughtful responses. Thanks to everyone who contributed.
Amber: ‘I think the even more appropriate question is…how hasn’t it changed me? Becoming a mother is this unimaginable gift. You do everything that you can from the moment you see that double line or plus sign to ensure the health and well being of your unborn child. You make these elaborate plans. You dream of a Harvard graduate that will find a cure for all cancers; of a president that will end all wars. You have these dreams and these plans and so you eat vegetables that you hate and swallow vitamins that make you nauseous. It is the beginning of the most crucial facet of being a parent…becoming selfless. Because this world is no longer yours alone.
You are going to be a parent.
As they grow older, you see your world slowly begin to change. There are these tiny moments that have you up late at night staring at a computer screen, checking milestone charts and symptom checklists. You may live in a state of “that’s not my child” or “he/she will outgrow it” for far longer than you should. You may hide at first. Hide from the people that you believe will judge you or blame you. Hide from the friends that you have whose children are so glaringly “normal”.
Since yours is so glaringly not.
But then, as quickly as the fear and isolation began, you remember what you were put on this planet to do to begin with. To be there for your child, guide them through the ups and downs, but most importantly to take pride in whom and where they are. That is what your responsibility always was and always will be as a mom and even though some of the circumstances have changed, what you wanted all along for your child has not. What you want for them is a beautiful life. The only thing that has changed is now you have you have to be ready to be much more involved in that process and at first; it is hard to know if you are ready for some of the difficult times ahead of you. What has changed is that you no longer have a choice. Even the meek must hold their chin high and carry on. Raising a child with special needs is not for the weak or faint of heart. You learn that there is no one that can stand up for your child but you. You become a voice where there isn’t one. Though being that voice will make you feel a sense of pride that doesn’t come from anything else you will ever do in your lifetime.
I think the biggest change that has come about in me is a sense of duty that is unparalleled. I do not sit around and wait for milestones to be hit or progress to be made. I study, research, and seek out new ways to teach. I went from being a parent that simply expected things from my child to a parent that was willing to put in the work and so I rejoiced each victory he had with him. I went from being a mom that ‘wanted’ to a mother that ‘did’’.
I learned that life isn’t always what we planned and that learning to roll with it and make the most of it is what really shows what we are made of. I used to believe that everything a child does is a reflection on the amount love that a parent feels or the time that is spent on a child. Now I know that the true indication of love is not caring-at all-what anyone else thinks you or your child should be. True love is felt in your heart, not seen in the eyes of your peers. I learned that my dreams were never his to begin with and letting my idea of who he “should be” go was a freedom that most parents may never know and for that, I am eternally grateful.
I have become stronger than I ever thought possible and braver than I knew I was capable of. I became someone that knows when to stand my ground as equally as I know when to bite my tongue. I truly became who I have always wanted to be.
And I owe that all to my beautifully perfect, imperfect son.’
Mr C’s Mom:
How has having a child with autism changed who you are as a person?
Tough question, but I actually have time to reflect upon this, as I sit here at home on my sick leave… from stress related to our son’s latest development: extreme tantrumming. Don’t worry, we’ll get through it. Always do
He was diagnosed a week before his 3rd birthday, back in 2005. A surreal experience, really. Like a bad dream and you keep waiting to wake up. Then the intervention years. ABA, applying/begging for government funding, baby daughter under the autism microscope for 2 years, biomedical interventions, more behavioural interventions (Floortime, RDI), remortgaging the house to pay for everything, and then not a cent left to spend on any more intervening.
He’s going to be 11 in May. He’s adorable and has the best smile and freckles ever. I know I’m biased, but I’m also right. He speaks in incomprehensible riddles and even his own made up language. Repeats the same phrases over and over, the latest being, “You got an orange walrus.” Very difficult for the passerby to come up with a response to that conversation opener.
When he’s clear, he can answer some very basic and tangible questions like, “Do you like lollipops?” … “Yes!” … or “Where do you want to go?” …. “The mall store.” or “The lake.” He is addicted to water. Spends hours dunking cut up plastic toys in creeks, lakes, sinks, basins, bathtubs, and yep, toilets everywhere.
When he is content, the family is usually content. But when he is upset and raging, well… there’s no ignoring it, really. Glass gets smashed, appliances get dented, pictures come off walls, doors get mangled, shins get kicked, and lots of tears flow.
So how has this changed me? Well, I like to think for the better. When I don’t feel sorry for myself (I try to confine that useless emotion for only 1-2 times per year), I am more optimistic about the future than I was when I was a teenager and also when I was in my 20s. I am way less cynical and more forgiving than I was in my late 20s and early 30s. That’s pretty good, isn’t it? I am hopeful for new developments, but also grateful for Mr. C’s current abilities, his affectionate ways, his forgiving nature, his inability to lie, his trust in his mom, dad and sister. He can ride a bike and climb any tree (or fence) and will excitedly wade into the coldest water for a swim. The look on his face is pure joy.
He’s different. I’ve always liked different. That hasn’t changed.
Thanks for reading!
I feel that I have become much more patient, not only because for my son I have to as he needs extra time to process information he is receiving, but also since I have learned how difficult it is for him to understand the world he is living in.
I have learned that just because I, or someone else, just “get it” that he will not always necessarily too just get something. Infact nine times out of ten he doesn’t, and if you check something out that seems really really obvious it’s sometimes amazing to discover that he’s not “got it” and it’s fascinating to hear how he has infact got it…
Such misunderstandings as these happen on a daily basis, and I feel that I have changed by really slowing things down. I must help him to keep up, and understand what’s happening, and if I don’t he will not keep up and perhaps be confused by a situation or conversation which seems “obvious” to a non ASD affected mind.
Here’s an example. Social norms, and unwritten rules. Why wouldn’t you call an old lady “old”. Why would someone be joking if they are not laughing. Why would you not give your parents back money from your own money if they have bought your tea. Why do you have to call people titles such as mum, dad, gran, aunty, etc when other people call them by their first name…
The school environment is the most challenging, as you’re up against several teachers who unless they are trained in ASD, they don’t understand how their minds are working. For example, why would my registration teacher keep on yelling at me about being late; “Why are you late this time, I don’t want to hear your excuses!” When it’s not an excuse, why would they keep on saying it was excuses and continue to be angry?
Quite often people suggest that it is bad behaviour, and look for me to discipline him. If he does not understand a social norm, then how can he be able to be malicious and manipulate it? Most of the time I am able to use this new found level of high patience, but I must admit I am getting less of it for people and their sheer ignorance.
Life for us was always in the fast lane. I have always been of the opinion that he needs to be active and he needs to be meeting people and he needs to be out there in clubs and activities… And all the while by pushing for this I was actually causing an overload on his arousal levels which was in actual fact cruel. Life has changed and we are much slower now, and my son copes with not much more than his extremely packed day at secondary school.
I am the aunty of a very amazing little boy with autism. I sometimes feel like an imposter in these situations as I am only the aunty. I do not suffer the sleep deprivation and nitty-gritty everyday struggle that you guys do…. but I am very close to my sister and could not love her children more if they were my own. I make sure I see them at least twice a week and I am as involved as I can be in their lives – I do all I can to support my sister and soak up as much information as I can to be as much help as I can. Therefore, whilst I am not a parent of an autistic child – I am immersed in this life and have been hugely changed by the goods and the not so goods of autism.
I started following your blog some months ago and suggested my sister and her friends (also Mums of fab little chaps with autism) also follow you. They all do and have been encouraged and calmed by your posts. They have all been pondering your question last week in how this has changed them as people and as I have listened to them journey back to a life before autism I have found myself wondering the same thing.
I think that the most overwhelming change came with my realisation that I was so ignorant of anything outside the NT perspective before we sought diagnosis. I thought I was open-minded – boy was I wrong!
Our little man is 3 and a half – my sister has her own Montessori nursery which has a wonderful local reputation – especially with children who have additional needs – she knew the signs and sought diagnosis before he was 2. I fought hard – everything she was worried about was an inherited trait to me – I saw so much of our Dad in him – I just thought he was like his Poppa. A year and a half on in our journey and I have come to realise that he is just like his Poppa – what I now understand is that his Poppa was very likely to have been a step or two up on the spectrum himself (mind you… I now believe we are all on that spectrum somewhere but that’s another rant) I was so resistent at first – I am ashamed to admit that I was that person who thought autism meant Rainman. But I quickly came to see it wasn’t about me and what I thought – it was about him and it was about my sister – what did they need?
They needed me to understand – to learn as much as I could – to support to the best of my ability – so that is my goal. I have joined many support groups and forums and have been amazed by the open kindness I have found. I learn so much everyday that what has changed about me becomes more and more changed each day.
I think because our diagnosis came a little while before London hosted the Paralympics this also provided a catalyst to my shift. All at once I was being exposed to the amazing talents of people in the face of what I considered a disability. I do not see from this angle anymore. I am differently abled to my nephew – and we are both differently abled to the athletes we watched this summer – but we are all equally important to society as a whole. I do not feel pity anymore when I see someone differently abled to me because I now understand that I have no idea what they ARE capable of. Before I saw what people couldn’t do – now I only see the potential of what they could do – of course some may need more support than others to reach their full potential.
I no longer judge people by the behaviour of their children or judge adults by what I may have considered odd behaviour in the past. I visualise the spectrum as a rainbow – and when I meet people now I enjoy learning what part of that rainbow they are walking on. And that is an amazing way to meet people.
I believe that education will have to change to meet this myriad of needs – I believe education will need to split into channeled schooling. No longer NT schools or unit placements but NT schools, ASD schools, schools for children with physical disabilities but no mental issues… you get the picture (idealistic maybe… but it will have to be this way in the future) ASD should not be treated as a disability – who are we NTs to judge – I am so open to the fact that my nephew is going to be capable of so much more than me – our job is to give him every chance to get there. It has made me see society as a much more varied multi layered enigma and we will have to educate appropriately in order for us to reach our potential as the differently abled mass that we are.
So…. autism has definitely changed me and changed the way I look at life and the people I meet. I am much more open and less judgemental and the world seems a lot bigger and far more interesting – and of course the greatest gift of all that autism has brought to me in the supremely amazing little creature that is my nephew – the entire person that he is has taught me that I can love someone this much.
I once again humbly acknowledge that I do not live the bad days that parents do – I do not have to make the tough decisions about school, I do not deal with the 3000th bottle of shower gel being poured all over the floor for the 10th time that week, I am not sleep deprived and I am not kept awake at night sick with fear for my child’s future. Of course, I wish that this beautiful boy didn’t have to face more difficulties than most children – I hate that my sister lives with the worry and exhaustion that I cannot take away from her and I wish I could make things easier for them. I wish the world was a kinder place to differences…. all I can pledge is that I will continue to embrace the open-mindedness I have found in myself – I will give support to this community and help to raise awareness – I will do all that I can to make the world kinder – person by person. And I look forward to spending the rest of my life learning how to understand the heavenly intricacies of his beautiful mind and soul.
I have rambled I know – I apologise… I do know my place in all this – I hope that perhaps my feelings might serve to show that family members can embrace this with all their hearts. We want to help and I hope parents might be comforted to know there are those of us who love your children deeply and who will be prepared to help make the world more aware. I might not be there to administer the melatonin but I will talk to everyone about it so people understand why you may choose to use it. I will talk openly about meltdowns so that my friends and colleagues may choose to see a distressed child in a different light next time they are stepping over a screaming 3 yr old in aisle 19 at Tesco – and if those people all tell their friends and if those people tell their friends……
Thank you for your ear.
All the very best.