Five years ago this very day my youngest child was officially diagnosed as having ASD at the age of 3 years and one month. This child was the first member of my family to receive a diagnosis of ASD but he wasn’t the last.
I remember clearly that day feeling a huge sense of relief and an engulfing overwhelming sense of sadness and loss.
I was relieved because we finally had a name, an explanation for the what seemed torturous condition that at that point had a deep grasping overarching control of my beautiful baby and his development.
Sad because ASD is forever and at that point I believed it to be the single worst curse a child and family could ever be afflicted with. I felt like a light had gone out inside myself.
Loss because of all the things I believed we had been robbed of, all the things my child could and would never be.
Five years ago today is also the day the “penny dropped” completely for me, the day I knew for the first time without any doubt in my own heart and soul I too had ASD. It was the day I finally admitted to myself something that had niggled away in the back of my mind from the first time I learned of Aspergers and felt it described myself to a T.
It is one thing admitting something to yourself, though it would take me four further years and for another of my children to receive an ASD diagnosis for me to find the courage to have the conversation with those closest to me and my doctor and later psychologist. It then took me a further four months after receiving my own diagnosis of ASD to come out the closet initially to friends and lastly very recently my middle and only child without an ASD diagnosis.
I found it strange that I instinctively knew how to help my youngest child after that initial first assessment nine months previous to that official diagnosis day. It was more than a mother’s instinct, I began to question how I knew, how I understood what my child needed with very little guidance at that point from professionals. I also found it strange that I was so sure that the awful heartbreaking prognosis my child was given that day was wrong. I wasn’t in denial, I one hundred and one percent accept my child has ASD, what I knew that day in my heart and soul is my child would exceed and defy all of those professionals expectations.
How did I know, because as another adult with ASD put it recently “If you want to understand a child with autism, ask an adult with autism.” (Bonnello 2018).
We are cut from the same cloth. My child and I. In those months between initial and final assessment this was the conclusion I was coming too. All of my children and myself are exactly like my youngest child in presentation just to lesser degrees. My eldest child is most like my youngest and my middle child is most like myself and we sit above the other two in someways we demonstrate the spectrum element to ASD perfectly.
Five years ago today signaled a turning point for myself, my youngest child and possibly my whole family.
I sat listening to the professionals summing up the findings of their months of assessments, being told my child was unlikely to ever develop functional speech, being told my child would live in their own little world where it was unlikely many if any would be able to reach them there. Being told my child would require significant life long support and that they would never gain independence.
I listend, I cried.
Not as much as I did after the initial assessment months earlier, that one saw me fall apart for a little while. I am ashamed to say I very nearly walked out.
I don’t do running away though, so stay I did.
The feeling in my heart that day was they were wrong, even if the voice in my head was trying to convince my heart to accept what was being said. I just knew they were wrong. There was a beautiful child just waiting to find their way locked inside my child I just knew it.
How can professionals write a child off at such a young age?
And wrong they were, my child is still significantly delayed in their development at now eight years old my child is very much like a child of ages two or three in most areas of their development our biggest challenges continue to be the lack of danger awareness and the battle to get my child to eat solid food.
Where my child has proven professionals wrong is they have developed functional speech, they are toilet trained, they can manage some life skills for themselves, they show a deep empathy and affection for others, they have imagination, they seek social interactions, they seek to share interests and enjoyment, they are learning to read and can type to express themselves in a written format or to explore the web.
My child is not isolated and lost in their own wee world, my child lives in our world and is very much a part of it. Just as we are all part of my child’s world. My child is loved by everyone that knows them just as my child shows them affection in return.
My child’s eyes, smile and laugh, light not just my life but the lives of all that know them. It is impossible to be in my child’s presence and not be smiling with him, or sharing a laugh.
My youngest child is my biggest inspiration, if achievement was measured by how far one individual has progressed against all the odds stacked against them, in five years they have achieved more than was ever believed possible for them to achieve in their lifetime.
I am not unrealistic my child still requires significant support at all times and this may well continue throughout their life, but my child who was written off five years ago today, makes a valid valuable contribution to the lives of everyone they touch, they are a happy child, so far removed from the hollow shadow they were on that assessment day.
I no longer see ASD as the curse I onced believed it to be. ASD is a different way of interpreting the world and expressing oneself, I believe in neurodiversity and there being a place and purpose for everyone. Those who are neurodiverse (ASD) walk a different path to those who are considered neurotypical (normal) it doesn’t mean their lives are of any less value.
It has been a long hard journey, with many battles fought and won and many more still to follow. We wouldn’t have got out the strating gate though if it weren’t for my belief and determination that my child would defy all initial expectations. As well as my following my instincts in how progress could be achieved.
My child inspired me to question my own abilities, my child has taught me to believe in myself.
Well if that child can achieve against all the barriers life has put in their path because I believed in them and through both mine and their own determination then what is my excuse for not trying to see what I could achieve when I started to believe in myself?
I have always had determination.
So try and learn to believe in myself I began to do.
I went back to education, education wrote me off a long time ago, now I was going to have to somehow learn to believe in myself and my ability to succeed.
It was clear by the point of that final assessment at least two of my children had needs that were not typical, I needed to understand how to help them, I needed education to allow me to be their biggest teacher, advocate and supporter. It would become apparent in time all three children were going to require me to be more than just their mother.
I started off with one unit from The Open University on understanding the autism spectrum, it seemed like the perfect place to start, autism had come to stay, understanding it or trying to was a logical first step. I did it, I passed.
I took a few other small units through our local college in child development and understanding and supporting children’s behaviour, in our home we experience every type of challenging behaviour imaginable again it seemed logical to learn more, I passed those too.
I signed up to a certificate in higher education in education studies, over two years, one unit was about supporting education, something all my children required the other an introduction to childhood studies and child psychology, again a logical step, I passed that too.
I signed up to learn to drive, my academic conquests gave me the confidence to try, after quite a few failed driving tests and eighteen months later, I finally passed my driving test just over a year ago now, something I had for many years believed I would never do, because I have little coordination and find driving frightening, even now a little bit still.
I started to really believe I could study at higher education level, this year with help and support from a few friends I completed a diploma in child and youth studies.
It seems appropriate that today I accepted a place to study for a degree in child and youth studies. I will require support and for others to believe I can do this, just as my child requires support and for others to believe in them.
I believe I can do this though and when I feel like giving up I will stop and look at my child and my child’s siblings and how far they have come against all the odds in the last five years and I will keep on trying and believing just as they do.
Who knows where we will all be in another five years time?