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Louis' Story

My Short Story Of Living With Our Aspie

It probably started in early infanthood, when we as parents commented that she, our beloved daughter Eleri, did not crawl as most babies did, but instead ‘bottom shuffled’ along the floor to reach things. We even placed her on her belly at around this 12/13 month mark to see whether she would crawl, but to no avail; she only grizzled and cried until we turned her over.

Later, after learning to walk, perhaps later than most, a little sinister in hindsight, was the fact that if she fell forwards, she would not hold out her hands to protect her fall, resulting in facial injuries!

We did think that this behaviour was a little bit odd, but we did not ponder the ‘why’ for too long, as after all we were new parents and this was our first child, so we had no ‘benchmark’ to compare with.

I will mention some of the many frustrating aspects of her growing up, such as her spoiling all and seemingly every game we tried to play with her. These would include board games as well as ball games such as tennis and squash. All would start well, but rather than concentrate on learning to improve, Eleri would quickly grizzle, complain and then spoil the game. This behaviour was incredibly annoying to all of us family members as we were very competitive in everything we did and could not understand her attitude at all.

Meal times, I vividly recall would also degenerate into a scolding and shouting event for a number of reasons; the first being that she would not take ‘No’ for an answer and would carry on repeating the same inane question or behave badly (usually when the news broadcasts were on) or would pick a quarrel with her sister or one of us parents. This disruptive ritual was compounded when we had meals out in cafes or restaurants as her behaviour was always disobedient and quarrelsome, resulting in raised and angry voices accompanying the inevitable embarrassment.

I also recall the frustration of not being able to teach her, even simple things like adding from a very early age. It was as if she would ‘log out’ mentally and show little interest. Of course this continued during schooling and was picked up by the teachers, who, rather misguidedly, with hindsight, thought that she was a bit deaf. This ‘misdiagnosis’ in turn led to her having ‘grommits’ inserted into her ears to aid the draining of (imaginary) fluid in order to improve her hearing. This was of course a ‘red herring’ which had no bearing on her concentration at all and ironically she is blessed with very acute hearing and hears things ‘not for her ears’ on occasion!. As I am writing this, I am thinking, how on earth did we as parents not pick up on this during childhood and seek medical help much sooner.

We were concerned about her speech, its rapidity and failure to finish off words. I now know this to be what is medically termed as ‘Dysphasia’. We are Welsh speakers and another point of frustration for me was that she could not utter the proper Welsh sound for the letters ‘LL’ as in ‘Llanelli’ and I made enquiries for her to receive speech therapy. This would have been around the 12 to 13 years of age period and despite having a couple of speech therapy sessions, the therapist left for another post and no progress was achieved. I should add that she has within the last year received more speech therapy sessions via Whitchurch hospital, Star project and despite a great rapport with the therapist who claimed some progress, we as family members see no improvement especially when she is exited or annoyed, when her speech becomes incoherent and unintelligible. This in turn causes her and the poor listeners some considerable degree of frustration.

The “carrot and the stick” approach was applied to her discipline, especially during her early teenage years, but nothing seemed to work. If she entered her crazy mode, she became fixated on trifling minutiae and nothing would budge her. I remember many occasions when myself or her mother would have screaming rows and Eleri would be sent to bed as punishment.

One of the hardest things for me to bear was that she appeared to be ‘unteachable’ as she would repeat the same mistakes over and over with the same outcome. Now I knew that even animals can be trained to alter their behaviour, given either positive or negative stimuli, but seemingly not our Eleri. I also found it extremely difficult to cope with the petty and very devious stealing which was detected on more than one occasion. She also developed a habit of lying to get out of situations rather than deal and confront the consequences of having made bad choices.

Of course there were times when we had to accentuate the positive elements in her life however small they may have been, as we were very concerned that all we seemed to be doing was criticising her every move and then feeling guilty that we were cultivating a very negative and inferiority complex in her.

To counter this, both of us parents spent much time and energy on her homework and GCSE project work, so much so that she did attain 4 passes in her GCSE exams but sadly not the vital English Language and Maths which are essential to any career.

We also noticed that she had much trouble in forming good lasting relationships and had few if any friends. She was about 16 years of age and we were becoming more and more anxious about her behaviour, when I stumbled across a scientific article in my work role in an Immunology Scientific magazine. The article was titled: ‘ADHD OR BAD BEHAVIOUR’

I devoured the article and the first of many pennies dropped. I had not at that point heard of ADHD (Attention Deficit Hyperactivity Disorder), but I knew that her behaviour ticked all the relevant boxes. We were really exited for we believed that we had at least found a diagnosis. I contacted the GP with my discovery and he referred Eleri to a Child Psychiatrist, who after many questions and questionnaires to both us as parents and to the school teachers, finally came up with the diagnosis of ADHD and she was promptly prescribed with Ritalin. We rather naively felt that we had found a cure for her troubles, but how wrong we were!

After a very short time, it became apparent that the Ritalin made her condition worse; more irrational and even manic. At this period of her life we wanted to believe that her condition could be improved and stabilised with drugs, which is virtually all mental health strategies were able to offer, but once again time proved this to be false.

Eleri left school at 16 and attended College at Pencoed Agricultural College where she studied Animal Care, initially at First Diploma Level and after she passed that, she went on to study the same topic at National Diploma level. The College tutors and we as parents had to put in much assistance into her studies, but it was a relatively stable period of her life and she generally enjoyed her three years at College. After she passed her National Diploma, she started on a HND course, but this was indeed a step too far and she could not any more rely on the tutors relentless input into organising her studies and she became very agitated and in the end had to drop out of this course.

Fortunately, soon after, and relatively drug free, she got a job at Petworld in Focus Do It All, with the support of the Shaw Trust. She worked here for two and a half years and was happy, despite some minor ups and downs and she benefitted from the disciplined routine of work. During this time she also passed her driving test and we gave her Mum’s old car and we thought that things were looking up.

Alas, it was not to be, and Petworld closed within Focus with Eleri being transferred to the D.I.Y. section and having her hours cut by half down to evenings and weekend work. These were unsociable hours and she soon began to miss her usual colleagues as well as her previous routines. Her health began to suffer and within a few months had entered into a period of depression, which forced to go on sick leave and eventually to lose her employment at Focus in July 2006 at the age of 23.

This indeed was the start of a slippery downward spiral with alternating periods of depression and hypomania, probably, as we now believe, to have been exacerbated by trialling various drugs. The list of the drugs prescribed over the next few years were: Olanzapine, Mirtazapine, Chlorpronazine, Buspar, Amisulpride, Quetiapine, Lithium, Escitalopram, Citalopram.

During the next few years, she was admitted on no fewer than three occasions to the mental hospital at St Tydfils, Merthyr Tydfil. On her last visit there, even the mental health staff commented that it was not the place for her, but she was so desperate for help that she advocated self admission to hospital.

A new Consultant Psychiatrist, began to review Eleri’s case around this time in late 2006 and he was not entirely satisfied with her diagnosis of ADHD, so he asked Eleri and our permission to refer her to a specialist in Cardiff Consulting Rooms, Newport Road, Cardiff. We appreciated this move and duly attended a consultation with Professor David Laing in Cardiff, where both us, parents and Eleri were thoroughly questioned, especially concerning past history and Eleri was given paper exercises to perform. At the end of this process, Prof Frazer concluded that Eleri’s condition should be re-diagnosed as Asperger’s Syndrome or high functioning Autism, which is on the Autistic Spectrum Disorder (ASD), with underlying ADHD and Dysphasia. At last, we had a firm diagnosis, but it had taken 24 years of her life to get to this position. This is sad, for had she been given more support during her formative school years, I am sure that she would have achieved more than she currently has done and would have prevented much of the stress and tension in our family. Nevertheless, we were very grateful for the diagnosis from Prof Laing.

Although, the drug experimentation, continued unabated until very recently, now that we had a concrete diagnosis, it opened several very useful doors to Eleri. To name a few:

  1. She now has a CPN (Community Psychiatric Nurse) who keeps an eye on her, attempts to teach her life skills and suggests new strategies.
  2. Has been referred to some really useful projects such as the Whitchurch Hospital Star Project, including Speech Therapy and imminently, The Genesis Project.
  3. The successful granting of benefits such as DLA, Incapacity Benefit (now ESA), income support and housing benefit.
  4. Support in securing her own flat.
  5. Bus Pass
  6. Previous access to an Occupational Therapy team at Caradog Unit at Aberdare Hospital.

All this has made a big impact on her and has helped to keep her as stable and as drug free as possible. She is currently on a low dose of a mood stabiliser called Aripiprazole. She is as independent as she can be, although she feels it necessary to have daily visual contact with parents, especially mam and she is prone to irrational behaviour if we go on holiday for a fortnight or so, despite having a sister living at home and a long term boyfriend.

She wants to work again to add structure to her day, but despite many applications she has been unsuccessful. She has had a few interviews, but gets worked up and anxious for them and is unable to sell herself unfortunately.

I organise her finances, otherwise she would be in debt and disarray, as she finds it difficult to organise and motivate herself. She is content with this arrangement and it takes the pressure off her. I am now retired on ill health and I am able to spend some time helping her to organise other aspects of her life such as any meetings with bureaucracy etc.

All in all there is a large support network now in place, since the correct diagnosis was obtained and I sometimes wonder, what would have been achieved had this been obtained earlier. I feel that autism should have been considered at least at age 16 when she was branded  incorrectly as just ADHD.

She attends the Cardiff Asperger’s Social group once a month, in addition to the newly formed RCT Asperger’s group at Pontypridd. She is always keen to attend and benefits from the social contact available at these groups, as by and large, Aspergers’s can be socially excluded with very few real friends. Society misunderstands them and even mistrusts and mocks them from an ignorant standpoint.

What does the future hold for Eleri, I do not know. Certainly, we have learnt enough to categorically say that it will not be one of more drug experimentation, as this strategy messes up her brain even more than it is already. I cannot blame the mental health professionals for this strategy as they are underfunded and it is easier to prescribe the drugs than it is to patiently calm down the hysterical patient by some other means – we have found distraction techniques particularly useful and the occasional Diazepam to take the edge off the severe anxiety.

I would dearly love to see her back in gainful employment, but with the current financial climate and recession, it seems unlikely in the short term. I also have grave doubts whether she could cope as a mother with babies and children, without our support and we are getting older and more frail.

So the big question is what will happen to her after our days. It is hard to imagine anyone being in a position to offer emotional and practical help daily which she currently receives from us, especially during the extremely difficult periods of anxiety and depression.

We will continue to support her as best we can for as long as we can, for despite the frequent frustrations, she is and always will be our dear beloved daughter. There is also hope on the horizon. Only last week, scientists in America have discovered the implicating protein in autism, at least in rodents. It can only be a matter of time before a cure is found, Hurrah.

Which brings me to a little verse picked up many years ago and is so applicable to autism:

Do not mock the weak or odd,
But show to them the love of God,
It is a sin and heaven will frown,
If with disdain you put them down.