Autism burn-out

Today is World Autism Awareness Day. Yesterday I thought I might do something to "celebrate" - paint my face blue or bake some cupcakes topped with blue icing. Even make a badge. But it's the end of a long Easter weekend sprinkled with meltdowns and we're all spent in this household so I'm just going to go with what's on top...

In the same vein that autism looks different for every diagnosed child; every parent will have a different journey with autism. But, I do believe, that behind every child diagnosed with autism, lies a parent or parents with a broken-heart. I don't think this can ever be under-estimated. It is not fair to compare different "shades" of autism and to claim that just because one child is more verbal or appears more social than another child say with classic autism (that the general population is very familiar with) that their journey is easier for them - or their parents. Every parent with a child with autism is devastated - if not by the diagnosis itself - by the journey they went on to get that diagnosis and then of course life post-diagnosis.

Now my daughter is eight and well and truly immersed in school, it is frequently assumed by some that we're done with autism. That actually, she just had it for the first five years of her life and now she's cured.

I do not believe that autism can be cured personally. I do believe it can be controlled, managed and understood. I believe schools and other environments can set things up to make life easier for a child with autism. But it's for life. It may look different as children grow up and mature - but it will always be there, underneath the surface.

I really feel for the families whose children with autism require a lot of intervention and help - perhaps permanently, perhaps for the rest of their lives. My daughter is not one of those children -  her autism is of the invisible variety. The kind that doesn't get funding easily, the kind that is dismissed as not being "true autism." Although she has three different kinds of help at school right now; she spends large parts of her week without extra support in place.

For the first five years of our autism journey I fought, I explained, I justified and I advocated. This in itself was an extra job on top of managing a little person with autism. Last year everything came to a head and I had to give up the fight. I had to accept that not everyone will understand my daughter's autism the way I'd hoped and liked them too. I had to accept that I was burnt out and it was time to retire from advocating for autism. So I stepped down from my four year local position as a committee member with Autism New Zealand and I applied for full-time study for this year.

I am now three months into my study. A lot of my energy and time goes into that now. But autism lives on in our household and we certainly still go through some rocky phases. This Easter was one of them. After eight weeks of attending school full-time plus three afternoons last week at a friends house so I could start my first week of "teaching experience", there were meltdowns a-plenty. My daughter needs downtime and she hasn't had as enough of it as she needs over the last few weeks. Home is her sanctuary - where she can let it all out. 

I read this week about "autism burn-out" which occurs when those with autism try to conform and fit in - and then tire from their efforts. I certainly know this to be very real for my daughter. She is aware of her differences and will try to hide them - she will keep up with her peers and no longer wants extra breaks put in place for her in the classroom. She will ask for breaks at school at times now, when really needed.

But it exhausts her - doing the everyday normal kid stuff. There are so many things we don't do because most weekends are about recovering from her school week. She simply doesn't have the energy a lot of the time to do much except blob in the weekends. Attending a BBQ as a family means leaving early. In fact, social gatherings aren't regular occurrences in our household.

I think in my phase as an advocate for autism, I felt pressured to paint a merry picture of autism - to demonstrate that life can be almost normal with the right strategies put in place. Although this is true in some respects, in many ways our home life isn't normal at all. This is of course the side of autism that no-one sees in our circle of friends and family - the routines, the quiet time, the repetitive DVD watching, the spinning in circles, the flapping of hands, the meltdowns, the sleep disturbances, the nightmares, a child who grapples with both depression and anxiety at times; a child with potential mental health issues.

Not only do I believe the child with autism has autism burn-out - but so do the parents. Eight years of sleepless nights (they may not be every night  now - but there are still phases), living with a child who develops agraphobia at times and will not leave the house (especially during school holidays), and managing friendships that fall over is tiring. 

I love my daughter. Of course I do. But I also suffer from autism burn-out. There isn't much more I have to give at this stage to the cause. So that is why I've taken the year off to study - to have a different focus. But sometimes I have to face reality and address the bigger issues when they arise, as they have this weekend. It is simply my job as my daughter's mother. 

My husband and I went away for our first ever night away together since our daughter was born in February - one night and it was amazing. We haven't had a date since. We have respite care - we need to use it. Sometimes it is tricky to fit it in (especially with full-time study for me) but it is needed. I know behind closed doors there are many parents of autistic children who desperately need a break - to perhaps get out of the house and do something they can't do with their child with autism. Note to self: it's time to book in another date for ourselves.