Autism, it affects everything, but how much information do you share with others?

Having children with autism dictates my everything. Every decision, every move, every conversation. It is a part of my life now, forever.

Every time I open my mouth to say something to my children I have to filter it first. For Master 5 you have to be incredibly careful with your words. His brain does not understand sarcasm or humour. If you say “I’m freezing to death out here”, implying simply that it’s bloody cold, he thinks you are actually dying. The result is several hours trying to explain that you are indeed fine and that you are not dying and that everything is fine.

Same for Master 10, he takes everything you say and his brain twists it into a negative. He constantly belittles himself and devalues his own self worth through negative self doubt. You have to be so careful when talking about any of his achievements as he then gets anxious and then has a meltdown over the fact that he got anxious in he firsts place, it’s a destructive circle that can loop and loop.

Master 7 on the other hand is about 10 steps behind everyone else. He hears what you have said but his brain takes four times longer to process the words. This can lead to him getting confused if you give him more than one task at a time or try to have a long conversation.

As such I have learnt how to word things in a certain way as to avoid any meltdowns or anxiety they may have. This is where my problem comes up. With close family and friends they are also starting to learn how my boys function and how best to communicate with minimal drama. But how much information should I give when someone outside their inner circle is going to be looking after them.

Master 10 got an invitation to his friends birthday party this week. It’s a sleepover and then tomorrow they are going to play laser tag at a local venue. Now I need to stress, Master 10 has not been invited to a party in nearly 2 years. As he got older his group of friends has dwindled to 3.

2 of those friends he has had for years, I know their parents really well and they have sort of come on this journey with us. They have seen the changes in Master 10 and accept him for him, his quirks and all. However his 3rd friend is new, they have known each other for a while but until recently had nothing in common.

They both share a love of an online game which they play constantly. They have become very close and when Master 10 got his invite he was so excited, he has been smiling for days, this is something that never happens so off course I told him he could go. But I was then left with the question, how much do I tell his friends mother?

I don’t know her well, we have crossed paths once or twice at school functions but that was it. I know she is good friends with another parent who I know really well and she assured me that Master 10 will be perfectly fine in her care, so that worry was gone, but the question remains, do I give her a 50 page binder of different scenarios that may come up and how to handle them or do I say very little and hope for the best. You can’t teach someone how to communicate with your child in five minutes, gosh even I’m still learning.

As Master 10 has been struggling over the last 2 years he hasn’t stayed at anyone’s house or gone to a party or a play date without me. I honestly feel like we have jumped back in time to his first sleepover when he was 7, the fear and concern that your child will be upset or scared and unable to come to you. I know he has grown up in a lot of ways but in others he has regressed and I’m not sure how he will handle it.

I ended up opting for the middle option. I explained that he is Autistic and thet he has sever anxiety, the look on her face was enough to tell me I needed to elaborate. I explained that he was likely to be perfectly fine, he almost never has meltdowns unless under extreme amounts of stress, which is unlikely at a birthday party and that he had his phone to text me or call if he needed to.

I also explained that if he got quiet or started rocking he just needed time and he would sort himself out and be fine, leaving him alone is the best course of action. I also said if she had any concerns to call me no matter what time and I would come and get him.

My only concern is that perhaps I didn’t give her enough information, I didn’t want to bombard her with all his little behaviours and moods but I also didn’t want to leave her scratching her head if he opted to sit alone and not join in with the other kids as he sometimes does.

I guess we will find out, as I’m writing this post Master 10 is at his friends sleepover. He has already messaged me several times, which I expected, I’m hoping that being able to text or call will be enough support for him and he will stay the night and have a great time tomorrow.

Cultivating the few friendships that he has is so important. He does not cope well when he is lonely and with only 3 friends it is important that he has these experiences with them. Children need friends, they need to feel part of something and feel as though they are wanted.

Despite my concerns and the very real possibility that tonight could end in disaster. I feel like I have done the right thing. I don’t think sharing anymore than what I did will change what happens. He will either have a fantastic time or he will be so anxious that he will have to come home. Nothing I could have shared with his friends Mum is likely to change that.

As always thanks for reading and please feel free to share in the comments if you have had a similar experience and how you handled it.

One slightly anxious @mumofmany