Six Years On: How Has Having A Diagnosis Of Autism Helped?

According to my Facebook memories it is exactly six years today since my daughter was diagnosed. She was 4 at the time and had been going through the process of diagnosis for over a year by the time her appointment came.

I recently heard a parent of a child suspected of being on the spectrum say they would never look to get their child diagnosed as they didn’t wish them to ‘be labelled.’

So how has having my daughter diagnosed helped?

Firstly it helped HER.

This is by far the most important point. My daughter is able to accept herself, understand herself and find her ‘tribe’ by having an identity and knowing that while she may be different she is far from alone. Her mental health was one of the biggest reasons I sought for a diagnosis. There is no shame is being autistic and I seek to promote her autism as part of her wonderful, unique and beautiful personality. It is who she is and she embraces that.

Secondly it helped HER EDUCATION.

By having a diagnosis her anxiety is recognised and supported. Her selective mutism is understood and not ignored. When she takes language as literal teachers can see she isn’t being cheeky or naughty but it is a genuine processing difference. Her social differences are understood and can be supported. Her strengths can be celebrated and her struggles supported. Sadly without a diagnosis some services could not be accessed and therefore support could not be put in place. Having a diagnosis brought patience, understanding and help that she would otherwise have missed out on.

Finally it helped ME.

I am still the same parent I was before but now my mental health has improved making me a stronger and happier person. We are too quick to forget how much parental mental health can affect families. When parents feel they are to blame for their child’s difficulties, anxieties and struggles they become defensive, depressed and isolated. Unfortunately parent blame is rife without a diagnosis as it is assumed the child is struggling through poor parenting. This is very rarely the case but it has destroyed so many families when diagnosis is delayed or withheld. I am more able to embrace my child, celebrate her and enable her because I understand her better and no longer carry the burden of guilt that I am to blame.

Naomi’s diagnosis report is very different to the child she is five years later. Her autism now manifests in very different ways but she is still autistic and both of us celebrate that fact daily.

Autism hasn’t stopped her succeeding, in fact in many ways it has helped her. She’s a rule-abider, people pleaser, unique and funny individual who accepts her own quirks and is happy being herself. She has struggled and even added ‘extra’ diagnosis over the years including an eating disorder but in the six years since her autism diagnosis she has won several awards, been on prime time TV, fought and won for a disabled swing in the local park for her brother and even written some incredible blogs about her own struggles.

Would I still want her diagnosis today if she wasn’t already? Absolutely!

Diagnosis isn’t anything to fear, it’s a key that helps you understand and access support. It doesn’t define your child it just enables them to be free to be exactly who they are.

If you are worried about your child’s development do seek advice from your GP, health visitor or child development team. It is in everyone’s interest to support and diagnose where necessary.

Advertisements

The most beautiful girl in the world

mirror1
Have you ever had a stranger do something so incredibly awesome it just makes you want to cry? I have. And it happened just this week. I pray the kindness and power of what the stranger did for me and my 4-year-old daughter impacts you the way it has impacted me. Some people make a mark on others lives that can never ever be erased.

We had went out as a family to a local place to eat. Everyday events like this have their challenges for every family but more so for mine due to the complexity of my sons needs and the fact we need to balance his needs with that of Naomi’s and somehow all need to get some chance of eating at least part of our meal. We could have chosen anywhere to eat but that night we opted for the local carvery. No waiting to get orders taken, the kids can see what they want on their plates and we can attempt to eat together without the usual demands for nuggets and fries.

Naomi is a challenge to feed in such places as her diet is so restricted and no-one wants a battle or tantrums in public. But a little mashed potato, a few selected vegetables and a little gravy got her picking at her dinner while quietly colouring in. Isaac had his usual loaded plate and was firing handfuls of food into his mouth like a child who had never seen a dinner before. I promise you they are twins but you would never believe it to see them eat!

However, even with food, Isaac’s attention span can only last a limited time and he was soon clambering over dad with food all over his face and fingers, wanting off to run around. A knowing look and wink of the eye was my signal that I was willing to take the strain tonight. To Isaac’s flapping, smiling delight he was getting mum. He brought a smile to my face even though I was missing out on a hot and delicious dinner yet again. But then I glanced at Naomi and my heart sank. Eyes bunched up with tears ready to explode at any minute, and a tender voice so timidly saying through her beautiful blue eyes ‘I want you to stay mummy’. Oh. This isn’t fair. They both need me so differently. And whatever I do one of them is about to protest publicly. I really must get that cardboard cut out of myself done. It’s the only way I can think of being in two places at once. And tonight I so want to be with both my babies.

I chose Isaac but prayed my daughter would know she wasn’t being rejected. I kissed her cheek quickly as Isaac vanished out of sight. ‘Come find mummy baby when you have finished your dinner.’ Oh Lord, this little girl is going through so much. She shouldn’t have to live like this. No wonder she has such tangible confidence issues and low self-esteem. No wonder she never wants to let mummy out of her sight. It must feel to her like she is second best, her wants and needs don’t matter, mummy prefers her brother. None of this is true but how do you balance the high needs of one child physically and communicationally with the high needs of the other socially and emotionally? Who is going to help the siblings of children with high needs? How can I let her know she is beautiful, clever, wanted and loved when my actions tell her I am walking away to see to the needs of her brother? Dad reassured her and encouraged her but it just wasn’t enough.

So my eyes were on my son but my heart was with my daughter. And God was about to use a stranger to impart a truth into her little life that would go deep into her inmost being.

As Isaac ran up and down in a little garden outside a group of strangers watched on as they drank and ate and talked. You could hardly ignore Isaac’s wild flapping, whooping noises and funny walk. But one young couple were watching him with smiling faces and pleasant eyes. And then little Naomi appeared and held my hand in the warm sunshine as we stood side by side watching her energetic brother. The smiling strangers asked if it was her brother to which she smiled and nodded. They invited us closer and handed her two coins, one for her and one for her brother. So very very kind of them. And without prompting Naomi said thank you.

We exchanged a brief conversation that her brother had special needs and that the children were twins. The lady reached into her handbag and fished for something. I hoped it wasn’t more money. She found what she was searching for and beckoned Naomi nearer. Looking my precious daughter in the eye she spoke lovingly and tenderly to her as she asked her a question.

“Would you like to see a picture of the most beautiful girl in the world?”

A whispered “yes”

To which the stranger opened a little love heart make up mirror and showed Naomi her reflection. To see my daughter smile and touch her reflection as she realised this stranger was talking about her was incredibly touching.

“You are so beautiful. Inside and out”
“Every time you look inside here remember you are special”

The words of a stranger. But exactly the words of God as well. Not to mention the exact words she needed to hear that day.

The lady gave her the mirror to keep and Naomi has barely let it go since.

I thanked the lady and her partner for the coins, the gift and the joy they had brought to my heart. But how do you truly thank a stranger for saying exactly what your 4-year-old needed to hear? I thank God once again for putting people across our path in exactly the right timing. And I thank God that the next time we go out it is mummy who will be staying with Naomi too.

I believe we all need to hear this message too. We can all feel left out at times, or second best or not loved. And every one of us needs to know that we are beautiful inside and out. We are special. And Naomi now loves to tell me “Mummy I am the most beautiful girl in the world”. Yes, baby girl, you are indeed.

mirror