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Natalie Sullivan shares her family’s journey to an autism diagnosis for their daughter, Megan, in her heart-warming and beautifully written blog piece. We are immensely proud and honoured to share Natalie and Megan’s story through our platform, in hopes that their story inspires and provides hope for other families awaiting diagnosis. 

I’ve been asked to share the story of our journey to diagnosis. I had naively assumed that everyone’s journey was very similar, but that couldn’t be further from the truth.

Megan has just turned 4 years old and was recently diagnosed with ASD. I knew something wasn’t quite right by the time she was 18 months old and had suspected that ASD might be behind some of the differences in my daughter. I often told myself that all children are different, and she’d catch up. That’s certainly true, but it became difficult to avoid the reality and the obvious difference between Megan and the other children her age.

Megan was born in very difficult circumstances; she was under the Consultant Neonatologist for review until she was 2 years old to oversee her development. In hindsight, this was probably the gateway to spotting some of the signs early on.

Every appointment was very positive, and we were given specific signs to look for in her progress. We were told to get in touch for an earlier appointment if, by 18 months old, Megan wasn’t walking or using 6 words in context with meaning (e.g. milk, toy, mum etc).

Megan’s development was completely normal for the first year, she was so smiley and happy, she chewed everything, laughed at all the silly things we’d do, and she was well above average for her height and weight. By 18 months, her physical development was barely a consideration. Megan was tall, strong and had good co-ordination. She was walking just fine, and we had to learn quickly how to adjust to a toddler that was very mobile – just like most families.

The worry was that Megan’s speech hadn’t developed at all. The Consultant had asked for 6 words in context with meaning – Megan had zero. She didn’t even say Mum or Dad, but it was more than that. Megan rarely responded to her own name unless she was really engaged in a game we were playing together, like peek-a-boo. She didn’t play with her toys at all, she only threw them on the floor and watched them bounce. She didn’t play with the other children and didn’t seem to recognise when someone was trying to play with her.

Our Neonatologist reviewed Megan and referred her to Speech Therapy. We felt relieved, it was comforting to have the support of specialists who could get her talking. Sadly, we received a letter to say that they wouldn’t see Megan for Speech Therapy until she was 2 and a half years old and they would happily see her with a GP referral when she was older.

Just before Megan was 2 years old, the Neonatologist had discharged her, believing that any issues were just a part of Megan and not because of her birth. We also shared that view – Megan didn’t show any signs of trauma and the delay in her development wasn’t for the Neonatologist to treat. However, we no longer had anyone there to review her progress and we still had concerns.

More than 9 months passed, and Megan was a little over 2 and a half and no further forward. All her peers in nursery were chatting away, pointing to things and taking grownups to the things they wanted to do. Megan did none of these things, in fact she had barely changed since she was 18 months old.

It really hit me when I was collecting Megan from nursery one day and a little girl by the gate told me all about the snail she found in the garden. She told me it’s colour, told me it was slimy, it had a shell, and it was “gross but cool”. Megan was so far behind, she couldn’t even say snail, let alone play with one or tell anyone about it.

We had an appointment with the GP to express our concerns, Megan was almost 3 years old by this point. She still didn’t say anything unless it was from the TV or a nursery rhyme. She could occasionally parrot words if we asked, but she never used anything in context on her own.

Megan still didn’t point, she wasn’t good with eye contact, she was still in nappies and she didn’t engage with other children at all. She had started carrying out some quite repetitive behaviours too – opening and closing doors, spinning wheels on cars for ages saying “round and round” like Wheels on the Bus. She still had no friends, even though the other children tried to include her, she would just walk away in search of something solitary.

The GP referred us to a Paediatrician, Speech Therapy and put us in touch with the Schools and Families Specialist Services and a Health Visitor. We hadn’t engaged with a Health Visitor beyond about 8 months old after a disagreement about weaning. In hindsight, this was a mistake. Yes, they push things that we don’t want to hear and are driven by WHO rather than ‘real’ help, like the experience that other mothers can share – but we missed our 3-year review, and a child in need is where they shine.

When that review was eventually carried out, we were told that a score over 59 meant that we needed more investigation and input on a higher level because something wasn’t right. Megan scored 135. I knew she was behind, but that was a huge margin. Having Megan’s development quantified was suddenly very real.

The Speech Therapy Assessment had us put forward for regular appointments. A Paediatrician had a long chat with us and sent us a form to fill in, one for nursery too.

The Coronavirus lockdown hit when Megan was 3 and a half years old, so all support was via video or phone. The support was there and still very helpful, but different. Megan hated videos but preferred it to an appointment in person so… A win at last?!

Megan responded so well to Speech Therapy, the tiniest tweak in our approach was exactly what we needed. We had the right idea, but now we were really getting somewhere. Megan was beginning to use single words that were functional, she could say “change” when she was dirty, and “drink” when she was thirsty. Finally – we spoke the same language and we had a window into her needs. Well done Meggie Moo.

Our final appointment was with the Paediatrician, in person for about an hour. I wasn’t expecting a diagnosis on the spot, in fact I thought it was years away. I have heard stories of “oh I’ve known for years, but it was appointment, after appointment, after appointment”, but Megan seemed to display all of her Autism on the day without doing anything differently. She was just being herself.

And that’s it. That’s Autism. It’s a different version of the Self. Others might not get it, but we do. It’s not about what’s right or what’s wrong among everyone else. It’s a shade in the tapestry of Megan’s story. It adds light to the good parts and shade to the hard parts, but the overall picture is pure and beautiful.

Not every part of her story will be joyous, some days are really tough. I feel so inadequate every day, but then Megan reminds me. She has a smile on her face and squeezes me to let me know that she’s happy and she’s OK. I need that to be strong enough to help her on her journey. That’s what we do as parents, but our path has a few differences.

For me, the most beautiful streets in the world are cobbled streets. They’re a tough walk, but so worth it and rewarding every step of the way – even when it’s tough under foot. Megan is my favourite cobbled street – I just need the right shoes.

 

Natalie’s 24/7 for Autism

Natalie will be covering 247 miles in the month of November for Autism East Midlands.

“I will be running and walking my way across 247 miles in November 2020. If Megan lives with her autism 24/7… then what’s 247 miles in comparison?!” – Natalie.

Donate to Natalie’s JustGiving Page today at https://www.justgiving.com/fundraising/natalie-sullivan7