Is your brother OK?
Yeah he’s OK it’s just his brain works a little a bit different to ours but he’s still my brother and he will be OK.
A conversation overheard between my eldest and her friend. My heart swelled with pride hearing how she explained her brother’s meltdown in a restaurant. But this was not at any measure the end of the story neither a depiction of the true reality behind being a sibling to an autistic brother. Since my son’s diagnosis I have so many people ask me how myself and my partner are coping as “autism parents” and how it’s important we have respite regularly and a good support network. However what has hardly ever been mentioned is the support and care for siblings of those with autism. Why doesnt anybody ever ask me how my daughter copes?
Admittedly after first being diagnosed I did ask what I could use to help my daughter understand and was pointed in the direction of some reading material and an Autism group which siblings could also attend. However was it really enough? Here’s my daughters journey as an Autism sibling, in my words and what I feel needs to be changed to support autism siblings.
There is just 14 months between my daughter and son. Since the moment he was born they have been inseparable and she doted on him. I remember when he was around 6 months and I was feeding him in his bouncer, the door bell rang so I quickly jumped up to answer only to come back in the room to see her, at the age of 20 months, carefully feeding him the remainder of his porridge with meticulous care and love. As they grew together their bond was evident for anyone to see.
Once we moved to the countryside from London, the alarm bells started to ring as I recognised some of the traits and behaviours Louie was displaying. My post Autism How I Knew, talks about his diagnosis in more depth. Louie was 3 and my daughter 4 at this stage. I had the usual comments “he’ll grow out of it” “it’s just his age” but I’m glad I ignored these and persevered in what I knew in my heart was right. I cried after receiving his diagnosis even though I knew he was autistic before I even entered the building. It was the relief that I wasn’t losing my mind, I didn’t just have “my teacher’s hat on” as so many people had told me, I was right, he was autistic and now we could receive the help and support we needed. I think at this point even I was just seeing the support and help we were going to receive as just for Louie, after all he was the one with autism. However as the weeks ticked by I realised how much of an impact this was going to have on all our lives especially my daughter and Boss Baby who was just beginning his journey inside of me.
Louie has always been so reliant on his sister. He cried for her when she started full-time school, but I was relieved as I knew she would be having her own space and developing her own friendships at school. As much as it was still hard once they were home together, they fought like many siblings do, but I knew she had her time-out at school and on the whole they actually played together brilliantly. At bedtime Louie would always sleep in her bed with her which I found cute as babies but now was realising it wasn’t very fair on Alice. Louie didn’t sleep very well and as soon as he woke (usually 3am) he was waking Alice to play and as much as I attempted to encourage her back to sleep it was impossible living in such a small house, with just 2 bedrooms. He would scream for her to play no matter which room I took him into. She was quickly becoming sleep deprived and falling asleep through some of her days during reception class. Eventually we moved and they now have their own room allowing Alice to have her own space, although commonly Louie is found curled up at the foot of her bed after sneaking in once she’s asleep, just to be close to her.
My children have always played together well but as Louie has developed his need for control in play situations can be over whelming and unbearable for his sister to cope with. Playing independently is near impossible for Alice as Louie likes to control all aspects of the game and has full-scale meltdowns when the game is not how he envisages. If I try to intervene he also reacts badly and finds it hard to cope with more than one person to play with. The level of control displayed through play is, at its worse, him telling Alice exactly what to say back if role-playing or playing puppet theatre. If she doesn’t go along with his demands, which understandably at times she doesn’t, then a meltdown is imminent with violent attacks on her or myself and my husband. Alice has so much kindness and hates to see Louie upset and complies and plays the way he instructs but it concerns myself and my partner that she is unable to play her own games or even read a book in solitude without Louie objecting. When my husband has time off work we try to split them by one of us taking Louie for a walk with the dog whilst Alice can have some much-needed time out to play and choose her own games with me or play with her baby brother which is also frowned upon the majority of the time by Louie. Louie’s school have also noted the play situation and are aware of this behaviour and we are working on social stories that involve play and how to play together with other children.
When I was 6 years old I can’t even imagine what there was to worry about. I certainly cant remember a time I sat and worried, yet my daughter seems to constantly have a head full of worry and anxiety for her brother. For a long time when Louie started in reception, she would ask me to speak to his teacher because of an incident in the play ground involving Louie and another child, or because he hadn’t eaten his packed lunch etc. We would have these discussions just before she went to bed and no matter how much I tried to change the conversation to more fun topics or talk of her day, she always brought it back round to her concerns of Louie’s day at school. It was heart breaking. Thankfully now that Louie seems to have settled and made some friends it has lessened her fears for him but it still makes me so sad to think of how much she takes on mentally about Louie’s autism.
When Louie started at Alice’s school I soon realised that rather than playing with her own friends, Alice had started spending break and lunchtime with Louie. I think this was probably one of the hardest situations I had to overcome with her. When I asked her to play with her friends she replied that Louie was sad and on his own. School had been Alice’s only respite from the meltdowns, violent outbursts and all else that encompasses Louie’s autism at home and now it seemed that was being taken from her as she was one to one with him during the school day also. Thankfully after voicing my concerns, the school helped ensure Alice was given some space at play and Louie some guidance to form his own friendships. I know they still play together at times and that doesn’t concern me as I know now that Alice now has her own friendship circles.
Help for Autism Siblings
The examples above are just a few of the areas of Alice’s life that are affected by her brother’ autism. Every autistic child is different and so relationships with their siblings have different effects. Recently I have spoken to other parents with autistic children and asked how their other children cope as “autism siblings” Angry, confused, anxious and depressed are all emotions that have been referred to in reference to their child living with an autistic sibling. I feel this is a huge concern. If an adult expressed they are feeling anxious, angry or depressed they are able to access help and encouraged to take respite yet this doesn’t seem available to autism siblings. As I stated earlier, after diagnosis, I was pointed in the directions of some reading material for Alice and a support group for autistic children in my local area which siblings could also attend. The support group seemed to be enjoyed by some users but we only attended a handful of times before it became clear that it was ultimately making Alice more anxious.
Recently I spoke to a friend of mine who grew up with an autistic brother and they expressed the anger and loneliness they felt as a child and the resentment which continued into their adult years. No support was ever offered during their education or by helping their parents support him. So why now almost 30 years on from that example has not much changed? Luckily when I do broach a subject which is concerning me with my children’s school they help and offer solutions but ultimately that’s as far as it goes. There isn’t masses of information online and support groups are either too far away or just not right for us as a family.
I hope as Alice and the Boss Baby grow up they will never feel isolated or depressed as some of the people I’ve spoken to about their experiences have expressed. I feel its important that autism siblings are recognised for what they are dealing with on a daily basis. My daughter is the kindest, most caring soul I have ever met. The thought of that happy, gentle child becoming resentful, angry and isolated due to her brothers’ condition concerns me greatly. I know that my daughter will always be fully supported by us as her parents but I do feel more needs to be done to support parents with autistic siblings mental health and also the child themselves.
This week is Autism Awareness week, beginning April 1st to April 7th. This week I will be posting some of my older posts based around autism and some new ones. I hope you will join me this week on raising awareness.