All this week I’ve been sharing the responses I received to the question, ‘How has having a child with autism changed you as a person?’ The response I got was excellent, and having summarised some of those replies in the post ‘Changes’, I decided to share them in full in this series of blog posts. I will shortly transfer them all to the blog page also called ‘Changes’. To round them up, here are the replies that reached me via Facebook.
Thanks to everyone who helped make this worthwhile. I really appreciate your contributions. Apologies if I’ve missed anyone out- it wasn’t intentional!
Clairee Elizabeth It has made me think more about society and societal views. It has made me more aware. It has made me eat more and gain weight! It has made me sad but determined and it has shown me true love
Cyndi Marcus Richards Having a child with autism has opened both my mind and heart. I’m more patient and understanding and less judgemental now x
Anita Higgs It has taught me patience & compassion I didnt know it was possible to have. It has taught me unconditional love and to be less judgemental. I have met some amazing people who have worked with my son and have realised the importance of having friends who accept me & my family for who & what we are. And of course having a group like this is invaluable. There us so much support & you never feel judged or “the odd one out”. I have never met anyone on this group in the flesh yet despite this I feel their pain & feel that I know some of them.
Arlene Graham It has made myself and my family look outside the box, we try not to see what he ‘can’t do’ and encourage what he ‘can do’. Always looking for new ways and strategies to help him cope with what seems an everyday situation to most. It has taught us all not to be so judgemental if a child is having what most consider a ‘tantrum’ in the shop or street and think beyond what we see with our eyes. I’ve also learned that although he can sound vicious and hurtful on his down days, not to take his words to heart because he does love me in his own way although he can’t express it in the way others can. Most of all I’ve learned that he and all kids alike are worth every moment we spend on them as how we treat them as a person and an equal is lifechanging for them. <3 <3<3 my boys.
Dawn Catherine Dwyer To be honest it has devastated our family. My son was dx at 10 yrs. Aspergers/OCD/Mixed Anxiety. Just before dx my husband and his father (who also shows a fair sprinkling of AS) divorced. And my daughter moved out, she being my older child from a previous relationship. My son has specific phobias that are very isolating for him and me as his sole carer. Im 46, have no social life, my son is very forgetful and cannot be left for more than an hour if he is awake or likely to wake up soon. We never go anywhere or go on holiday. l am trapped in the nightmare of the benefits system as i cannot work and need to be with him most if not all the time. He gets out of the house about once a week, consequently he has a weight problem and at 17 is very unfit. His only conversing with the outside world is his XBox `special Interest` veering on obsession. The future is bleak. I try to get `on with` my own life but it is difficult when you have little money, no job, no friends a small family and an ex (his dad) who pops in for litterally 2 minutes a week.
I find that the actual Aspergers `bit` of his dx is OK to live with for both of us, its his phobias that kill our social life that could help him with lots of other interactions. I have even asked if hypnosis is available on the NHS. Just to try and live without his one particular phobia for a while, and see if he could then appreciate life without feeling anxious-enough for this to change his thinking. I try to daydream myself into his world and his emotions and his thinking and i try to reason it all out. I fail as i expect i will every time. Unfortunately he lacks the empathy to do the same from my NT perspective.
Tracey Harrison It has made me realise how complex the whole spectrum is. Not just in the sense of ASD but with all the co-morbid conditions that make the condition even more complex. My son has Turette Syndrom and OCD. When his ASD is not managed properly his OCD kicks in big time to help him find some control in his world. But as he is autistic he has no ‘brakes’ on his OCD behaviour, so insread of finding comfort in hand washing/checking rituals he listens to the compulsions to set fires, mess with electrictiy etc.
Hayley Thomas In my brutally honest way it has changed me as a person not that iv ever been what u class shy !! But I am now outspoken knowledgable and will question professionals. I trust no1 and live 4 my family. I find support lacking in all areas education and health I find ppl judge me daily and I hate most ‘muggle’ families !!!it has also showed me whole new world and me and my lil family could b no closer spesh as 6 year old can’t stand ppl we r kinda prisoners here ! I have met other amazin life long parents thro groups like this. I can ‘spot’ asd with my radar and now understand a lot more than I did b4 this journey when I was an ignorant muggle mum. X
Tracey Harrison Like the ‘muggle’ term! Cos unless you’ve lived with it, you’ve no idea. The other thing I’ve noticed is with siblings. Both my son’s siblings are described by all their teachers as kind and tolerant, treating everyone the same and not saying unkind things. I’m sure this is because of their expeience with their brother. x
Tracey Harrison My youngest definitely has traits, and he’s going to find life difficult..but I think he will be one of those classed as a ‘geek’ which is becoming a bit more acceptable now! He’ll find his niche but until then we’ll cope with the tics and the obsession with numbers and the saying whatever is on his mind and the lack of imaginative play…!!!
Mary Sutton I was diagnosed a year after my son. THAT explained a lot! What it didn’t prepare me for was how SOME people would automatically judge you for being autistic, but then fail to offer you any support.