Grieving? But no-one died?

I recently did studies on the grief process and the different stages involved as part of my course and got to thinking how applicable this process is when you get a diagnosis of autism in the family. Although its not a death that you're dealing with, you still go through the stages as the future and plans you had have changed for you and your child. There are five stages in this process, Denial, Anger, Bargaining, Depression and Acceptance. If you are lucky like me, you get to the acceptance part in a reasonable time limit but you do still find yourself dipping in and out of the other stages on occasion...

Denial

Oh how well I remember this stage... the one where it was easier to bury my head in the sand in the hope that I was wrong. Sure she's young, she might grow out of it. I'm wrong, there isn't a problem, its all in my head. You stay here for a while in the hope that it will go away, the signs and flags are waving but you choose to ignore them for a while until the moment that the "penny drops" and your world starts crashing in on you!

Anger

Why my child. This happens to other people! When did I become one of them?!? This is so unfair that my beautiful little girl has to deal with these challenges. You become angry and frustrated that it happened to you and your family instead of Joe Bloggs down the road. Then it hits you that you always pitied the "other people" and get angry that you don't want to be patronised or pitied although you yourself have been guilty of the very same actions in the past. You get overwhelmed with the why me's until the answer hits you.... Why NOT me? This was something my mother taught me when she became ill and I wanted to know why she wasn't angry that she'd been dealt a duff hand although she'd lived a healthy and clean life. It was when she answered "why not me?" that I realised the wonderful lesson she was teaching me. Things can't always happen to "other people"...

Bargaining

We start looking for cures, for answers. If I do XYZ it will "fix" my child. We look for the magic bullet that will restore all our hopes and dreams. We hear what we have to do to help our child to improve their communication, their quality of life and we do anything possible to do it. ABA, OT, SALT, Social Stories, Schedules, diet, supplements etc. How many autie parents do we hear state that they'd sell their houses and bankrupt themselves in the pursuit of the latest therapy available. Unfortunately there are sharks out there that take advantage of parents at this stage promising that the latest "batshit therapy" is the "cure"... Swimming with dolphins is something that whilst a wonderful experience, it's not going to miraculously start your child talking in full sentences.

Depression

Hanging upside down for 3 hours a day, drinking the dew from buttercups hasn't fixed the problem. You realise that its going to be a long slog and damn hard work. Your life becomes a ritual of appointments, reports, letters and fighting for services for your child that will work. Its easy to lose sight of your own needs and let them slide. Unfortunately, getting run down and tired has its own pitfalls. One of these is the "Black Dog" of depression. You want to retreat into your cave and hide for a while until someone who cares for you and supports you drags you back out. Don't be afraid to talk to your GP. Sometimes we all need a bit of help in the shape of a little round pill, its nothing to be ashamed of. While medicinal help is good to deal with your depression short term, its getting a support network established and in place whether a local group or an online group that's vital. Having others who understand and "get it" will help drag you from the cave that which seems attractive but is so debilitating in the long run. Ask for help...

Acceptance

Ok, so life isn't going to be the same as you thought it was going to be. Let go of the old dreams and create new realistic ones. Whats important is not your dreams but your childs dreams. There are plenty of successful, entrepreneurial people out there living life with autism. Many many autists go to college, have successful careers, get married and have children of their own. Don't look too far into the future as it's impossible to tell right now what capabilities and strengths your child will have 20 years into the future! Embrace and enjoy their current strengths and capabilities and stop looking at what they can't do... look at what they can. Acceptance is the greatest gift you can give your child. Different doesn't mean wrong, just not the same. Don't let anyone make you feel that way.

I've found over the past two years that as Munchkin has moved about on the spectrum (and they do, you're not stuck at the same stage always as the day you get your diagnosis!) I have moved about between the different stages of grief. Acceptance is great when you get there, but you will have days when new challenges arise that you'll slip back a few stages or dwell in bargaining or depression a little while. Thing is to keep moving back towards acceptance and getting on with your lives. I know its easy for me to say this as Munchkin has made such amazing progress but that in itself can put you back to the denial stage until autism shows its face again and you need to pull yourself through the different stages. I guess they don't call it a rollercoaster of emotion for nothing eh?

My Child is not a Stereotype...

Its Autism Awareness Month, and I've realised lately how my own perceptions of ASD have changed over the years, and how easy it is to mentally file things into stereotypical files in our heads. For many years, I would have been the one who conjured up an image of Rainman when the word autism was mentioned and even though I have an autistic relative, I'm ashamed to admit I knew remarkably little about the disorder. Back in 2004 this all changed when a very lovely little boy came into my life and taught me there was so much more to ASD than I had imagined. While I worked with him, my attitudes and preconceptions changed and I fell in love with this child. It broke my heart when the family left Ireland and I knew that I would no longer see him but was very grateful for the lessons I learned during the few years I spent with him.

While working and training in ABA/VB I met a lot of parents and children, but not being a parent of a special needs child myself, it was difficult to truely understand what life was like for them. Yes, I spent five days a week working with kids on the spectrum, but its NOT the same as being their parent. Most of the children I met were nonverbal and would have had challenging behaviour at times so when I got pregnant with Munchkin and at 33 weeks pregnancy realised that autism could possibly be on the cards with my little girl, I panicked. I vividly recall saying to a friend that I could handle any disability that was dealt up to me, (I had refused prenatal testing for Down Syndrome even though I was classed as an "older" mother at 37). Anything that was, EXCEPT autism! I cried and hoped and wished that it wouldn't be the case. Looking back now, I realise how unfounded those fears were but thats with the wisdom of hindsight (why can't you buy that stuff by the crate eh?) As educated in autism as I thought I was, I still had a long way to go understanding this complex and huge spectrum!


Three and a half years on and a hell of an emotional rollercoaster later, I'm still playing mental pingpong at times, making me realise that I STILL have a lot to learn about ASD. Because Munchkin has progressed so much, I often kid myself that I can't see her aspergers anymore. I question my own sanity and her diagnosis on the good days, then get a dose of reality when I see it again. We have adjusted our lives, our homes and everything we do and LIVE verbal behaviour so much that we don't chart data, or click mands, it just comes second nature to all living in the house. I hear a lot from people who don't meet us often, that how could she have aspergers, "sure she can talk can't she?" Its not until they try to have a conversation with my gorgeous girlie that they realise there is a difference between talking and being conversational...

People tell me how lucky I am that she has come so far and I agree, but there has to be a flip side to this too and I think its the constant questioning in my own mind (and in many around me!) I do accept her aspergers and love her unconditionally, quirks and all. I am so greatful for the progress she's made and exceptionally proud of her, however instead of getting a pat on the back or a well done, you quite often get the original diagnosis questioned instead. You automatically defend as know that yes, she's doing great, but have you LOOKED at the sheer volume of intervention she's had, how hard she's had to learn what she knows and how the struggle you've had to get here, so you start pointing out the quirks, which almost feels like you are betraying your child! I was asked recently about "recovering" and "curing" my child and would I remove the autism if I could. My personal opinion is that if I removed all traces of Munchkins autism, I would be removing her personality as its as much a part of her as the colour of her eyes. Now ask me again, would I like to make life easier for her by teaching her skills to help her? Hell yeah, of course I would.





How can I do this I wonder... well raising awareness of autism as a huge spectrum is a start. Channel 4 are showing a very good documentary which started last night called "Young, Autistic & Stagestruck" which follows 9 autistic adolescents who are all effected by autism in varying degrees and personally I found it enlightening (review here). For once I saw a program that didn't just focus on nonverbal asd, but also on aspergers, and much as I hate the term "high-functioning" autistics. I finally could imagine what Munchkin could be like when she's older and am looking forward to the rest of the series. I thought the show would make me feel sad, but I was pleasantly surprised how the makers are shooting it with empathy and sensitivity and think its a good start to stop stereotyping our kids.

Finally to dispel a myth about aspergers, I'll answer some other questions to save you asking if you meet me... no, my daughter isn't gifted, she won't be the next Bill Gates, she cant do any tricks and we have no plans to go to Vegas to count cards ok? :P