13 years ago I gave birth to my first child, a boy! I was 16 years old.

Being a young parent was hard enough as I also lived alone, but what made it harder was the fact that my child wasn't doing what the books said he should be doing.

My son cried constantly. Not strange for a newborn, but at 10 months old, having a baby cry 22 hours a day wasn't "normal".

My health visitor came out after I cried down the phone to her with exhaustion and frustration. I hated myself. I blamed myself for my son’s behaviour. When the health visitor came out she observed my son, gave me some advice and a return appointment for when he was one.

I tried all the advice - it didn't work.

My son's crying and tantrums got longer and as he got older they were becoming more extreme. He would head-butt floors and walls. He hated me holding him, he wouldn't play, didn't like any noise, he still hadn't slept more than an hour at a time per night.

At 12 months-old the health visitor returned to do a check-up. She told me something wasn't quite right but not to worry, she said she wanted to refer him for a developmental check up with a specialist. I was young and had no idea what was going on. I just waited until the day I had a letter to come in and see a paediatrician. I wasn't giving any indication of what this appointment was for.

I remember sitting nervously. The health visitor was with me, my son was wandering around throwing whatever he could get his hands on. He had just turned two years old.

The doctor called us in. I sat down and I was asked a barrelful of questions.

"How many words can your child say?"

“Erm, none.”

"What does he like to play?"

"He likes lining up my ornaments. He doesn't really like toys." I said, naively thinking this was ‘normal’.

"Does he sleep?"

"In total he has around three hours a night."

"How is his diet?"

"He will only eat cheese on toast."

The questions went on and on for hours.

The doctor witnessed my son screaming, throwing everything, bashing his head against the table, climbing up to high places, lack of eye contact, lack of speech, unable to manipulate toys, unable to use a pincer grip, to name a few. After a few hours, the specialist looked at me and said “Your son has autism."

I remember replying "OK." (I actually had never heard of autism before). I was 18 and all I knew was school and then becoming a full-time mum! I was given a few leaflets and told more appointments would be sent out. I thanked the doctor and left.

I got home and wasn't worried about this diagnosis, I assumed it was something he would grow out of as I wasn't told anything at all about it. It was only after a few months when I saw my health visitor again that she explained autism is a condition my son will have for life. It would affect him socially, emotionally and his communication. I was told by some people that he would never talk, read, write, love, make friends – all of which he can now do!

The diagnosis process was really smooth, but I just wish someone at the time had sat and explained everything to me. It took me years of research to get a decent understanding of autism.

When he was diagnosed, there were no Facebook support groups, there was one meet-up group that happened once every few months. It was a really lonely, scary journey. I have since set up a Facebook support page, Sugar, Spice and all things Autism. I hope that others starting their autism journey have a place they feel supported, where they feel they're not alone!

Last year, my daughter was also diagnosed with autism at the age of two. This time I was prepared. I knew what I was doing.

I also heard about Family Fund last year and it has been a life saver! I cannot work, I am a single parent and both children have autism and require a lot of care. Family Fund managed to help by providing us with a freezer after mine broke, it means less running to the shops for fresh food. They also provided a weighted blanket to help my son have a few calm moments and a huge beanbag for him to sit and dive on. This is hopefully going to save my sofas from being ruined. A clothes card was also granted. My son often leaks urine and stools and it requires lots of changes of clothes day and night, so this helped top up his wardrobe and give me a bit more time to wash and dry clothes.

 

This is Yasmin’s first blog. You can follow her Facebook page Sugar, Spice and all things Autism to find out more.