Hubs and me had a long chat recently. We covered a lot of ground: hopes, fears, challenges, changes, our altered perspectives on the future. One of the issues we spoke of was loss and friendship.
Hubs operates differently to me in the way that he forms friendships. I function, in terms of friendship formation, almost like giant lint remover. I roll over the fabric of life and pick up new friends as I go, some who stay forever, some who fall off the lint roll. Sometimes I am less sticky, I find it harder to open up and draw people in, usually when I am in a bleak or depressed state of mind. Hubs is different. He says that his friendships form like fossils. Slow, intricate, beautiful, and encased in a rock hard coating. He doesn’t roll through a multitude of social opportunities the way I do, he doesn’t put himself out there, it’s just not the way he works. He has a few close friends who have been in his life a long time, and he is happy with that.
Unfortunately, the autism journey can shake even the strongest rock coatings to their foundations. Even close, longstanding friends can become more distant from our lives following diagnosis, and in the lead up to it. People are left struggling to understand why this has happened. They crave support, understanding, empathy, interest, but it just isn’t there.
For many of us autism parents, this is familiar territory.
Friendships exist because, amongst other things, people have a set of shared experiences and understandings. Parenthood, the process of forming a family and bringing up children can be an especially strong time of strengthening and re-affirming lifelong friendships. The difficulty when your child is diagnosed as autistic, or that autism becomes apparent, is that suddenly your parenting experiences diverge.
The hurricane starts: Medical appointments, assessments, financial issues, changed priorities, detailed planning to navigate change and to attend social functions, battles with education providers. These experiences are part of the everyday fodder of autism parents. It can be hard for those looking in to appreciate how hard it is to juggle all this, how sleep deprivation and a few nights of meltdowns can suddenly turn into a fortnight of radio silence, a return phone call that never happens, a small item overlooked on a hectic to-do list. It can be easy for them to feel forgotten about, it can be hard for them to appreciate why we simply don’t have the emotional time and energy for the usual give and take of friendship that they are used to. Our friends may struggle to understand our perspectives and experiences. They or their children may find our children’s behaviour uncomfortable, they may not understand it. They may draw away from us because they don’t understand what autism is, and because they cannot understand or process the emotional journey we are going through, the highs, the lows, the outpouring of emotion.
Sometimes it is us as autism parents who do the withdrawing. This can happen for a number of reasons, many of which are not the fault of our friends. It can be painful to hear about aspects of their lives that you had expected to play a part in. For example, if you imagined your kids would grow and play together, whilst in reality your child has limited interest in interaction with others, and their child moves on to form other friendships. Or just hearing about their child’s simple everyday progress – a medal at swimming, getting onto the football team, their first sleepover – It can cut like a knife to hear things like this, especially when you are having a bad week, or if your child is having a difficult time of things. We autism parents may fail to appreciate our friends’ hard times too. They may speak of their pain and annoyance that their child didn’t make the football team, to them and their child it is bitterly disappointing, to us as we wrestle with no sleep and a child who is unable to converse with us, the urge to tell them how lucky they are and to get over themselves can be overwhelming.
It can also be tiresome to constantly have to explain things in order to simply describe how your day has been:
“She was stimming loads, we did a social story for the dentist but it didn’t really work, the melatonin was a big fat fail last night, but hey, she asked for a drink!”.
As autism parents, we instantly understand the story of that day. The struggles, the joy and significance of a child communicating her needs, the interplay of change, anxiety and sleep problems. To have to explain first what a social story is, what melatonin is, what stimming is and why it happens. To have to deal with questions, confusion, to have to educate and explain when all we want to do is hear someone say “yup, I totally get it”, before we slump onto the sofa. It’s exhausting
All too often, our friends are simply not able to give what we need. Simple, uncomplicated understanding without judgement. They are not on our path, it’s not their fault, it just is. If we are walking through a forest and they are strolling through a meadow, they can listen to our description of the shadows, the trees, the shafts of sunlight piercing through, but they are not seeing and feeling them as we do. They can’t.
Though all of this is true, some friends do try really hard to understand what is happening in our lives, and do manage to stay with us on the journey. I am blessed to have a wonderful friend called Beth, her son Josh is 3 months younger than Melon. Beth went through a difficult patch last year at the same time as I was realising that Melon was autistic. We kind of leaned on each other for a good while, we were comfortable in each other’s hardships, we both felt slightly out of kilter with a world that seemed to be moving on blithely with it’s journey while ours took unexpected twists and turns. Beth read and researched loads about autism, about communication, she taught Josh some makaton signs, she fostered his desire to communicate with Melon in the best way that he could. She found a story used to explain autism to pre-schoolers and sat and read it with Josh. Over summer, little Josh was hugely instrumental in Melon’s emerging interest in other children. Melon Invented a game where she bear hugged Josh and wrestled him to the floor. He allowed her to initiate this, he went with it, he took pleasure in it, he gave her confidence that her interaction was both welcome and enjoyable to him. Even now that they are at different schools and see each other less, Josh saves orange peel and foil for Melon because she loves to chew peel, and loves shiny things.
I am blessed to have Beth and Josh, also Marie and Erin – other non autism parents who have remained stuck to my lint roll over the last few years. I am also extremely blessed to have Sharon, a friend who was already in my life and whose son was diagnosed as autistic shortly after Melon. Having someone who not only understand but who is at virtually the same point on this autism journey is priceless.
Not everyone has this luck. So many autism parents find themselves socially isolated, and in the strange position of having to start over with building supportive, trusting friendships where you can be real about your feelings, all this at a time when your confidence in yourself and others may be at their lowest ebb. Support groups and online forums can be a good place to start, but even then, things can be difficult. Hubs is not a natural socialite, he doesn’t do meetings, he finds support groups awkward and contrived, he doesn’t like to just open up the floodgates to strangers. He is tenuously skirting around the fringes of blogland, wanting to dip in for support and to know he is not alone, but at the same time unable to handle with accounts of others struggles as his heart is so full of his own. The space that was filled by his previous friendships, firm and longstanding as he believed them to be, is not so easily filled.
If there’s one thing we know about autism parenting, it is that it changes you. You have to adapt, you have to become different. You have to take a giant leap outside your comfort zone and challenge yourself, so that you can build a supportive network around your family, to help you all hold together. Autism parents need people who understand them and can support them if they are to be the best parents that they can be. If that means putting yourself into situations where you aren’t comfortable, exposing yourself to new faces, taking a risk on trusting people again, then that is what must be done. I took a risk recently, I met with someone I only knew through my Facebook page. It was a total success, so much so that she has organised a special needs morning at a local soft play facility, to which she and I have invited other autism parents. We will also be meeting with two other Autism families that I know through a creative project I am involved in on the internet. Hubs is coming. He’s deep breathing, he’s giving it a chance.
The social morning is in March. The start of spring. A time of new shoots and growth. I hope that’s symbolic of the start of some positive new relationships too.