Our journey to autism

Charlotte Marie Culligan was born on the fifth of September 2007 weighing 8 pounds and 8 ounces and when I heard the words "It's a girl" it was without a shadow of a doubt the happiest moment of my life. We had a twelve month old little boy, Andrew, already at home and it just felt as though our family was now complete. From the very start Charlotte was an absolute angel. She slept soundly nearly all the time, hardly ever cried and when I held her she just used to lie so still and gaze into my eyes as though we were connected by the soul. My husband Jason will verify that I used to say that there was something so deep and mysterious about her and I really and truly felt that she was such a special child.

She was a small bit slower than Andrew had been to meet her milestones such as smiling and sitting up but we weren't concerned. We felt that Charlotte just liked to do things at her own pace and she really was such a happy contented baby that we felt blessed to have her in our lives.

The first time that I started to feel concerned about her was at around seventeen months. She still wasn't walking and seemed to have a little issue with her balance. She had an incredibly long attention span for playing with toys and watching the television and while her whole face would light up with joy whenever we would look at her or pay her any attention, she never seemed to actively seek attention from us or anyone at all really. When children came to the house she just played alongside them contently but never paid them any attention or showed any interest in them. I voiced my concerns about her walking to my doctor who sent her to a paediatrician for tests. He took some x-rays, tested her reflexes and basically told me that there was nothing at all wrong with her. I left feeling like a foolish, anxious mother but I was relieved.

Time passed and Andrew developed in leaps and bounds and Charlotte just seemed to stay developmentally still but we weren't that worried. Hadn't we been told she was fine after all? But one day when she was about twenty months old, I was watching her lining up her toys in a row (something she often did for hours on end), surrounded by other children whilst ignoring them completely and she was still not walking. All of a sudden alarm bells started ringing in my head. "This isn't right," I thought in a panic of horrified realisation. "Something isn't right."

 I voiced my concerns to Jason and for the first time ever I mentioned the word autism. I don't think that either of us thought that that was actually what she had at that time as except for the lining up of objects, she had no repetitive movements (Such as flapping or spinning) and she was very loving and affectionate. However we knew that something wasn't right. When I started listing her symptoms to Jason he suddenly began to see what I could see and his face became a mirror of my own and I could see all of my own panic and terror reflected there.

I went to see my doctor and blurted out her symptoms and he seemed quite concerned. That scared me more than anything. "You're thinking autism aren't you?" I accused him, "But it isn't" I stormed. "It couldn't be. She is so loving and she lights up whenever Jason and I talk to her and she is so clever and so wonderful and so perfect...." and on and on and on.

This would be the pattern that I would follow for the next two years. I would watch her, see that she wasn't developing at the same pace as her peers and start to worry and get scared. I couldn't sleep at night. I continuously prayed to a God that I didn't even believe in to not let it be true. I would look at my friends and their children and envy them in their blissful state of not having to worry that there could be seriously wrong with their baby. I just loved her so much. I wanted her life to be full of fun and laughter and friends and school and parties and sleepovers and pink glittery nail polish. Autism just couldn't be her future. That just couldn't be what was ahead for her. I couldn't cope with that thought. But just when it would all get too much for me denial would rear it's beautiful head and I would sink back into it's wonderful comforting arms where it would sooth me and tell me that it was all okay and my beautiful daughter was perfect and one day I would look back on all of this and laugh at the state that I had worked myself into.

Denial was my best friend in those days. When I was in denial I could sleep easily and enjoy my child and not over analyse every single thing that she did. Charlotte saw a physiotherapist (at my insistence) who told me that Charlotte's delay in walking was my fault because I was an over protective mother and I had made her too afraid to walk. Lovely! It was just wanted I wanted to hear. So there was nothing at all wrong with Charlotte, it was just me and I could fix me! Joy, relief and rapture for another few months and then slowly but surely common sense came knocking at my door and told me that it was impossible. It didn't make sense. Saying "Be careful" when your child is crawling close to a flight of stairs does not terrify your child out of following the evolutionary path to standing and taking their first step. Fear and terror would once more become a part of my life. Then a speech therapist told us that she thought that Charlotte might have a problem with her hearing. That made perfect sense. It explained her lack of speech and her poor balance and we felt that our prayers had been answered. She would just get some grommets and start speaking and all would be well but a hearing test told us that she could hear perfectly and so hope was yet again snatched from our grasp.

When Charlotte was three and a half years old I eventually managed to get her seen for a multi disciplinary assessment. This is a series of tests done by a psychologist, a speech therapist, an occupational therapist, a paediatrician and a physiotherapist. The strange thing is as although this might read as though I was desperately searching for answers; the truth is that I was just in fact looking for all of the professionals to tell me that my fears were unfounded so I could stop worrying.

That day we were told that Charlotte had a severe language disorder and low muscle tone. It wasn't what we wanted to hear but if was an answer finally. Thankfully her IQ was normal and she wasn't cognitively impaired in anyway but she would need to learn to speak as though she was a foreigner in a strange country and we understood that she would always speak as though English was a second language. They could not rule out autism but said that they would assess her again in the coming October and probably rule it out then.

For the next few months I taught Charlotte speech as though my life depended on it. Some days were very hard. There were days were she would not even look at me and I would hold her face and force her to stare at me. I would plead with her and say "This is big" and "This is small" holding up objects with desperation in my voice. I had to 'fix her'. If I could make her understand what I was saying then she wouldn't have autism. If I could get her to play with Andrew then she wouldn't have autism. If I could potty train her then she wouldn't have autism and there I was welcoming back my old friend denial.

In the months that followed we convinced ourselves that she had dyspraxia and we even told some people that dyspraxia was what she had. We didn't think we were lying. Dyspraxia is a form of clumsiness that is characterized by low muscle tone and often comes with a language disorder. How could it be anything else we thought?

October came and the assessments came as well. There was a play session where a psychologist played with Charlotte and assessed her response. She had a language assessment and I was told that thanks to my hard work her language disorder had gone from being in the severe range to the mild range. Her psychologist went to observe her in her play school environment and finally there was a question and answers session with Jason and me. I was excited and relieved when they were doing this assessment because finally we could put all thoughts of autism to bed and just concentrate on helping her overcome her language disorder.

Then came that fateful day when her psychologist rang me after she had observed Charlotte for a day in school. I was driving with the children in the car so I pulled over to take the call. She was vague and said that it had been interesting and that she had lots to talk to me about but that she would go into more detail at Charlotte’s final assessment the following week. As I was still wrapped firmly in the arms of denial at that time I flippantly asked if there was any point really in continuing with the assessment or could we just rule out autism altogether at this stage and there was a long pause and then Charlotte's psychologist answered slowly and gently  " I think we are going down the right path with this assessment Rachael" and then I knew.

Cars were driving past me and people were walking up and down the street talking to each other and going about their daily business and I couldn't understand it. How was the world still spinning? Did no-one know that the world had just ended? I was in shock. I was trembling and shaking but I couldn't even cry. I had been doing everything that I could to dodge this bullet for over two years and now it had finally got me. There was nowhere left to hide. I looked in the back seat and saw Charlotte's beautiful face full of innocence just looking at me and she calmly asked me to turn the radio back on.

I drove home in a daze and told Jason that I felt that Charlotte was going to be diagnosed with aspergers syndrome the following week. I was wrong. She was diagnosed with autism. Very high functioning autism but autism all the same. Due to her language delay, she didn't qualify for the aspergers title which at the time we felt didn't have as much as a stigma attached to it. However  we couldn't say the word though. At that time the word autism for us conjured up all sorts of horrible images of an intellectually challenged person with anger issues and violent tendencies.  A person who can't understand or feel love. A person who will never have a proper quality of life. A person who has nothing in common with my precious Charlotte

I cried all of that first day. Jason comforted me. Then Jason closed up and became moody and angry. I forced him to talk about it and then he cried and I comforted him. We were each other’s rock. For the first month we never said the word autism. We called it "That thing she has". We felt as though our child had died. We didn't lose a child in the physical sense just the idea of who we thought our daughter was going to be. We were grieving and it was very hard and very painful. We couldn't tell anyone how we felt. We didn't want anyone’s pity. We didn't want anyone to feel as though Charlotte wasn't as good as any other child. We didn't want her judged.

Very soon after the diagnoses however, we started to learn all that we could about autism and we started to discover that it wasn't the life sentence that we thought it would be. We learnt that plenty of people with autism can live very normal lives and sometimes with only the minimum of help and Charlotte of course shows us every day how beautiful autism can be. 

For example, did you know that people with autism tend to be very honest? People with autism make wonderful loyal friends. They will never lie to you or be devious with you and they will usually expect the same in return. People with autism tend to be very non judgemental. They accept people at face value. People with autism tend to be deep thinkers and often think outside the box. This can lead to the gifted qualities that so many people with autism have. People with autism are usually very loving and caring but often tend to just show it in different ways. People with autism can be very funny with a very quirky sense of humour. People with autism will never try to impress you. They do not care about following the crowd. They will always be just who they are. How wonderful that must be to have that sense of freedom. It is one of the things that I envy most in people with autism.

Charlotte is all of these things. She is incredibly funny and often sings songs but will insert the odd strange word, watch to see if we notice and then collapse in peals of laughter when she sees our confused faces. She tells us she loves us every day and is so full of hugs and kisses that at times it is difficult to get her to do anything else. She is so bright has just started to read phonetic words and recognises all her numbers, shapes and colours. She finds it hard to socialise but lately in her school she is trying very hard. She used to sit on her own and refuse to interact with the other children but now after a lot of intervention, she does circle time with all of the other children and plays with them at break. She and Andrew have an amazing bond and he minds her and loves her and adores all of the things that make her different. Her autism brings out the beauty in everyone around her.

Most importantly, I feel that this journey has made me a better person. I am now less inclined to judge a person as I do not want my daughter to be judged. I see the value in what makes people different and I have faced my biggest and worst fears and have found that there really wasn't anything much to be afraid of at all.

It has only been seven months since I heard the words “Charlotte has autism" but I feel as though I have emotionally lived though a few years. I no longer have bad days but I may still have the odd bad half hour where I feel the grief as freshly as I did in the beginning. That is normally caused by an outsider treating my child as though she is less than any other child. This can be something as small as a look of annoyance from a stranger when Charlotte is behaving differently to other children or a lack of an invite to a birthday party that every other child in her class has received. I am not stupid. I know that that is going to happen many times throughout Charlotte's life but we will deal with each situation as it arises and we will cope.

My daughter has autism but that is not who she is. She is a beautiful, kind, loving, clever, innocent and vulnerable four year little old girl who loves sweets and princesses and she makes me as happy today as she did the day she was born.

Autism now affects 1 in every 88 children so there is a strong chance that this may be read by another parent who is on that journey that I once took and if you are that parent starting your autism story then I don't want to spoil the ending for you but trust me when I tell you that it is going to be okay...... x 

Charlotte and her brother Andrew Christmas 2012