Dear Sam, yesterday, I took you and your sister along to your second CAMHS appointment. You were your usual smiley self when we arrived. The Doctor (Psychologist) explained she had heard back from the Speech Therapist and from your nursery, and felt ready to make a diagnosis of Autistic Spectrum Disorder (or ASD for short). She felt you were definitely making improvements, but she is certain that you are “somewhere” on the spectrum.
As you are only two years old, she doesn’t want to do your statement yet, as your support needs are likely to change quite a bit between now and September 2015 – when you will be starting in mainstream reception – all being well. For now, she will write a formal letter of diagnosis and pass it on to all of the health professionals who currently work with us.
I have blogged a few times over the past year or so about feeling “in limbo.” I felt a bit lost because we weren’t sure if you did have Autism, and a little bit overwhelmed about being left to find our way through the dark space in between referral and diagnosis. I guess your diagnosis will help me to find light at the end of the tunnel, to begin seeing beyond the labels and to appreciate what a brilliant little boy you are.
This diagnosis doesn’t change anything, Sam. You’re still the same beautiful, funny, cheeky little boy you’ve always been. Your Daddy and I are so proud of you, of everything you’ve achieved so far, and we are excited about everything you’ll achieve down the line.
Your diagnosis is a way for us to explain some of your quirks to people who don’t know you very well. To explain things to the people who haven’t yet spent enough time with you to understand why you are such an amazing little boy. It is a way for us to make sure you get plenty of support and encouragement in school, as well as at home.
You are only two years old, and that’s a young age to get a formal diagnosis in the UK. The Psychologist said your Mummy and Daddy had definitely done the right thing by raising our concerns as early as we did. This has meant we’ve had access to lots of support from early on, and this has definitely made a big difference to you, and to us as a family.
Your nursery place has allowed you to socialise and learn from your peers in a way I couldn’t have replicated at home. Your access to speech therapy has given me the tools (and the confidence) to help you to say your first words.
A lot of people have asked me what made me suspect Autism when you were so young. I will answer that question here. When you were 18 months old, Sydney was 6 months old. She was babbling and making sounds in ways you never had. She was constantly seeking out eye contact and loved to follow us around the room with her eyes. You never did this. You weren’t standing or walking and you’d made no attempts to try. You weren’t speaking at all, and you were really particular about the foods you’d eat. You rocked a lot, and you didn’t really play with toys.
Such a lot has changed in the 14 months since then. Now, at 33 Months old you love to play on your iPad. You love to walk and run around. You giggle – a lot. You seek out hugs and love to be stroked and tickled. You seek out eye contact, and love it when people smile or pull silly faces when you’re looking at them. You play with lots of other toys too – especially your BatMobile, your Postman Pat cars and your Rocket! You are fascinated by outer space. The sky seems to draw you in. You love to look at the sky both at night time and during the day.
You seem to have decided that your little sister is pretty cool recently. You’ve been sat together a lot this week. Side by side. You even moved over on the chair last night, to let her sit next to you. I almost cried when you did that, Sam. It made me realise that you are NOT autistic…. you are a Son, a Brother and an amazing little boy first and foremost. You just happen to have Autism (ASD).
I wish I could make people understand that they don’t need to say “sorry” when I mention you’ve been formally diagnosed. It doesn’t matter to me whether you’ve got ASD or not, you’ll be loved and supported just as much, either way. I’m your Mummy, and I don’t want to change a hair on your head.
So… Will your diagnosis change things? No. You’re still my little boy
and I still love you to the moon and back. I still love to cuddle up
with you, kiss the top of your head and stroke your arms. I still love to tickle you until you roll
over, laughing. I still watch in awe as you navigate your way around
your iPad faster than I can. Your diagnosis won’t change any of that. It
might mean we have to fight a bit harder to make sure you are happy
and supported in school. We might have to work at your speech for a
while yet, but you’re still perfect as far as I am concerned.
Love always, Mummy x