“You couldn’t write it.” I have thought and heard these words many times over the years as I was always the one at the other side of the desk telling parents about their child or young adult’s Autistic spectrum disorder diagnosis.

As a young woman I travelled extensively and then over time, studied for three degrees, the main one being in Speech and Language Therapy (Speech Pathology) where I specialised in Autistic spectrum disorders for over 35 years. I had no idea in the early years of working in this field, of how big a part Autism was going to continue to play in my life 

In 1995 I married and at 32, I had Lou- our joy, our first born- no worries initially except… 
Small niggles of worry, which everyone told me, were in my head.

My sister, who lived near to us at the time, had given birth to her second baby four weeks previously and so comparisons were inevitably made, but worries were easily reasoned away at this stage. 

Her feeding and reflux issues were put down to me not being quite as good at feeding as my experienced sister, her poor sleep was boxed as “some babies are just like that.” My concerns grew when at around six months old, she began to enjoy repeatedly tapping the plastic lid of her bottle during feeds and although now sitting well, she lacked a crawl. From there she walked well once placed upon her feet, however she seemed unable to coordinate herself to get up from sitting to standing. Looking back now, her feeding and coordination issues were due to hypotonia and a mild limb dyspraxia. Denial, however, is a wonderful thing and any worries were put into little pots somewhere in the back of our minds and sealed where possible. 

Over ensuing months, concerns deepened and when Lou was three and a half, after much fighting with the Local Authority and numerous medics telling us that she was perhaps “ a little bit shy” and that “ nothing abnormal was suspected,” we finally got a diagnosis- a devastating time which as with many types of trauma, I think I have for the most part, blocked out. I know I went through a very real grief process and I am unsure of how I navigated it and of how my husband got through because we experienced the grief differently.  I was the key figure to our daughter and the one she always wanted, we had a bond as I spent most of the time with her. For the first few years my husband wasn’t really acknowledged by her, which created for him another kind of intense pain, although looking back, this is typical compartmentalising behaviour of a person with ASD. Despite wanting at times, to just disappear or run away, the two of us had to stay present in some form for Lou and for our new baby son. 

After finally hitting rock bottom, increasingly becoming isolated and lost, with a child who had melt downs daily at many triggers, we arrived at a place where, after shedding all of the protective layers we had created, we stared in to the abyss. This was where we starkly faced a choice to fight or to give up. During that darkest night we decided to fight back. and fight we did. 

Firstly, after more battles, we got an ABA programme in place, secondly thirdly and fourthly over the coming years, we needed to fight further with the Local Education Authority at three separate Tribunals to secure what we considered to be appropriate resources for Lou. 

Fifthly, we fought the world at large, with their bigotry and general lack of understanding.

But… we also found some great people. After visiting twelve primary schools, I found a fantastic one with a wonderful head teacher who just accepted Lou for who she was. She joined in with a very forward thinking curriculum with support, did lots of outdoor pursuits and was also introduced to the flute.

When she was twelve and about a year into puberty, seizures began.

When she was 14, we got a diagnosis of a de novo 2p16.3 deletion on the short arm of Chromosome 2.

We followed an ABA programme until she was 24. It was neither rigid nor regimented. We adapted it to Lou’s needs and most of the time she never knew that there were programmes in the background. It just fitted in to her and our everyday life. It is not a panacea and is not for everyone but I think it’s merits lie in the structure it gave to her life and ours and the consistency it delivered when addressing behaviours and skills. 

We no longer follow any programme but at the end of the day, to my mind, the key lies in finding the right daily strategies for your person and delivering them consistently from every angle and in keeping an open mind to new ideas.

Throughout all of this time, I continued to work. In 2020, I was forced to hang my boots due initially to the pandemic, but also due to the increasing demands of the job which conversely enough was within an Autism community where I might possibly have found a greater understanding of the stresses involved for me, both living with and working with ASD. However, I did not speak of the difficulties I was experiencing, as despite working with them on and off for over thirty years, I was still self employed and so I was not their concern and I understand this. As the job required that I travelled over 100 miles each day ordinarily from my home to work and back and then increasing requests were being made for me to travel even further afield, whilst the needs of my daughter were rapidly changing at home, I had to let it go. I was often a hundred miles away and would get a call to say that she was in meltdown or had had a seizure. 

Stress? - A feeling of not having any control? - I was there.  Finishing my job added a little extra isolation and it took some getting used to.

Our journey to date has had it’s tough times, but it has also had some wonderful ones.

What have we learned so far?

Firstly, that my husband and I have and always will, pull together,  

Where possible, and needed, we face and talk about our worries, which if we are honest are always there in the background somewhere.

Together we also discuss financial issues which having a child with a disability brings, 

We are facing our concerns about our daughter’s future and what happens when we are no longer here to care for her, the impact that this might have on our son, the and the worry of her sudden drops due to her Epilepsy.  Honesty and facing  “stuff” helps to get some control over it.

There have also been many other positives:

We have won three Tribunals meaning that we have been able to create a firm foundation for Lou from the start with a structured programme, which addressed behaviours and schoolwork.

We saw a small talent in our daughter at an early age and nurtured this, one step at a time through a huge amount of hard work from her and us. As a result she now has a Fellowship in flute playing, having got Distinctions in all music exams ever taken, from grades 1-8, an Associate Diploma, Licentiate Diploma and finally a Fellowship which has allowed her to graduate in a cap and gown.  

She will now occasionally perform solo and plays in local bands. She was also accepted through auditions into the National Open Youth Orchestra but sadly after a year, had to drop out because the travelling involved and constant need to follow many rules all at once were just to much for her.

She also finally and with a great deal of work from herself achieved GCSE’s in Music and French, a BTEC in sport and a City in Guilds in Horticulture. 

We have also been able to maintain our yearly trips to Spain for a holiday, to still have Christmas and birthdays, all strategically managed by ourselves, but nevertheless, possible. We are aware that for some families, this is not possible.

The friends we have now are fewer than before but those we do have are true. 

We have also learned to enjoy the small things, the crucial things and have learned to live in the moment, for the past is gone and the future is never what you might think and can only be pondered in small manageable chunks. We take one day at a time, sometimes one hour at a time if needed.

In addition, I have also been able to write a book about our journey to date and have also been able to document and record on to video clips, some of the many learned and created, everyday strategies used over the years, both professionally and personally, which I hope may help others in the future. 

Today Lou is 27, she has a moderate Autistic spectrum disorder, some compulsions, anxiety and epilepsy. She still lives with us and for the most part we manage her well using strategies learned.  She is a kind, very loving and affectionate young lady who has no malice within her at all. She enjoys playing her flute, swimming and Jacuzzis, walking, her computer, meals out and the pub. She is for the most part now calm, loving and happy. We can’t ask for any more and are so grateful for this.  It was hard fought for and we work together to maintain it, but we do this using strategies which work for her and which we are constantly tweaking where needed.

We adore her and have always and will always do our absolute best for her. Our hope is now that once some kind of therapy or treatment becomes available for this deletion, that we have done as much as we can in this part of her life to give her the basic life skills to build upon and a way of making a living, which she may be able to use in the next part of her life.

- Allison (mum)