First off, chill out!

I know that’s easier said than done and your mind is most probably on overload – “It’s my fault”, “I need to get help”, “Why’s this happened to my child?”, “God’s punishing me”, “It’s because of…”

NONE of this is your fault or your child’s!

I’m going to speak to you from the heart about how I felt when I received a diagnosis of ASD for my son (aged two at the time) in 2015. I’m in no way a professional and everything I write are my own thoughts.

I used to take Riley and Summer to a Thursday afternoon stay and play group at a local church when Riley was just around 15 months. Riley used to walk around the room touching the walls with his fingers and pacing up and down the corridor. He put everything in his mouth, meaning his bib/ top was constantly wet. I distinctly remember one day a lady I’d never met before asked me, “When did you find out your son was autistic?” To which I replied “He’s not autistic”. But in that very moment she’d planted a seed.

I remember speaking to friends and asking them for their opinions. They would say to me “boys are a little lazy and tend not to hit milestones as quickly as girls” or they’d try and reassure me by saying “don’t worry, Riley will get there when he’s ready”.

Whether this lady triggered my inner ‘mother senses’ or they’d have come to me naturally. I started to notice changes in Riley. He wouldn’t socialise, avoided eye contact, started lining up his toys and began to flap his arms like a bird.

Like a lot of people I’d heard the word autism but lacked any kind of knowledge about it. I hugely regret not looking into autism the moment the lady mentioned this about Riley, perhaps I could have gotten him help sooner. I think I was in the denial stage and genuinely thought Riley was just a lazy boy.

As time ticked by it felt like we spent every other day at the doctors. I’m sure they were sick of my voice. I knew something wasn’t quite right and I would make constant appointments asking to be referred to see a professional to get a second opinion. The doctor would constantly say to me “we have to wait until Riley is two, we need to give him time to develop”. It frustrated me as I felt time was being wasted and no one wanted to help.

Three months after Riley’s second birthday and I had his diagnosis in writing in my hand! I felt relieved more than anything. I knew I wasn’t going crazy and finally I could get my son the support he needed. Deep down I think I knew Riley had autism before I received his diagnosis but I didn’t want to believe it. I’m not going to say I didn’t have a breakdown, because I totally did! Which finally drove me to anti-depressants (which is another story).

As Riley’s parent, the hardest part for me was the initial paediatrician appointment. There was a room of about three or four professionals, including the paediatrician and speech and language therapist among others watching Riley’s every movement.

I felt they were judging my parenting (what with being a single mum). I felt like I’d let Riley down, as though I’d caused this for him. I had to describe Riley’s every move, what he could do and what he couldn’t. It made me realise that actually all the stress, worrying, tears, hard work and tiredness wasn’t what it was like having a ‘normal’ two year-old child. It hit me hard that I do a lot more than what I would if Riley didn’t have autism and that’s why I would get so frustrated and tired out. I remember trying to monitor both children in the overcrowded, boiling hot room. My face felt as red as a tomato. I was very flustered and stuttered my words. It’s one of my worst memories thinking back.

Receiving Riley’s diagnosis was the open door to support the he needed. My only advice to you if you’re a parent like me is to never let go of the reins of your child. At one point I passed the reins over to our ‘keyworker’ whose job role is to support us with any appointments, chasing results, getting ready for school, regular meetings, etc. Never again!

It goes without saying that no-one will care for your child as much as you do. Nor does anyone wish to go above and beyond their job in this current society.

My son is now four and heading to school in September. Which has been 100% my doing. Everything from fighting for my sons EHCP (Educational Health Care Plan) to getting him a space in our special needs school. I wish I could wind back the last two years and do it all again knowing what I do now. Make sure to be on top of appointments and follow ups, if you don’t hear back on meetings or results don’t wait or chase the middle man (key worker), do it yourself. You’re your child’s advocate.

Best of luck if you have just received your child’s diagnosis. You’re not alone, there are so many of us autism/ special needs parents. Let’s all unite!

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