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Being the parent of a child with a diagnosis of Aspergers Syndrome

Being the parent of a child with a diagnosis of Aspergers Syndrome

Authored by Phil Meekin

Phil Meekin

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Approximate read time: 7 minutes

Being a parent is one of the hardest and most rewarding jobs any of us will ever do but the journey a parent makes when a child has been diagnosed with Aspergers Syndrome or Autism is arduous, painful and exhausting. The delivery of such news is initially met with great sadness as you begin to understand the difficulties that face your child. However, then comes the determination to ensure their needs are catered for and they will go on to fulfil their potential.

Sadly; in 2001 there was little on offer and what was available had to be fought for. I don’t think that much has changed since then. My son was diagnosed with Asperger’s Syndrome (high functioning) when he was 13 following many attempts at resolving issues with various special needs co-ordinators along the way. He was in his second year at a large secondary school and his quirky behaviour had been misread for 9 years.

As the first diagnosed child at the school my ex and I waded our way through bureaucracy to be met with opposition, lack of understanding and dismissed as being ‘fussy’ parents by untrained and unsympathetic staff.   The family suffered, our son who is extremely intelligent was underachieving and being bullied, we were distraught and frantic to find answers only to be met by brick walls at every twist and turn.

I was given the details in March 2002 of a charity: The Autism Centre for Supported Employment in Sheffield by an acquaintance and it was only after meeting with them that a glimmer of light began to appear at the end of a very dark and lengthy tunnel.

They agreed to take our son on as a client but the school refused for him to participate in the scheme; after several meetings we finally won yet another battle and our son commenced his work experience in a large shopping centre one afternoon per week under the watchful eye of charity staff. For the first time in his life our son was accepted, respected and his strengths were both acknowledged and praised. He was not bullied or excluded. The manager told me his customer service skills were excellent and she would be happy to have him on her payroll. He was a delight and not a hindrance!

I cannot put into words how relieved we were to see our son flourish during his time there; we began to think that there was a future and that our son would find his place in the world. The charity were always on hand to give us parental guidance; at last someone was listening to our fears and concerns and supporting us through this very difficult time.

Our son now lives in Cardiff and whilst we now see a happy young man who understands himself and has so much to give he is finding it so difficult to find a permanent full time contract. Having a job boosts self-esteem, fosters independence and makes life much more interesting, not to mention paying the bills. Everyone has the right to work, but people with learning disabilities are not always given the right opportunities to realise their potential. My ex and I are giving him extra financial support, we are extremely fortunate to be able to do this but we won’t be around forever. As a single parent and full time worker I find I have to work until I am 66 and my pension prospects currently stand at £4,000 per annum due to having brought up 3 children and worked part time for a number of years.

I end this blog in the hope that I will receive a phone call from my son in the near future that will lift my son’s spirits and give him purpose and structure to his day – that he has been given the opportunity to work for a living and his skills and attributes as a hard- working, honest and personable young man have been recognised.

My son’s story

I left school after a gruelling few weeks of exams during which I didn’t function very well and then ‘crashed’ in the holidays preceding my entrance to the local College I was due to start in September.  Following a call to the charity (The Autism Centre for Supported Employment) by my mum, I began working part time again at the shopping centre. I didn’t want to be helped by them again, I wanted to stand on my own two feet and I thought I was being paid by the take-away company but apparently my dad was paying me, my parents were so determined to get me out of the house and keep busy as I was feeling very depressed and not coping very well. I now realise that this action stopped me from disappearing into a black hole.

I attended college for three years (Performing Arts) and got merits and distinctions in all my modules. I was also working part time for a retail chain in the City centre. My manager and work colleagues were unaware of my diagnosis and I received a very good reference when I left to go to Uni.  I went to University in Aberystwyth to study drama and worked at a large supermarket part time whilst studying.  I think this was an amazing achievement landing a place in university after my poor GCSE results which were mainly E and F grades! This is because I was much happier and received some good support from my tutors.

My organisational skills are not great and I fell behind with my Uni work. I didn’t ask for help and apparently due to Human Rights, the tutors were not allowed to give me any additional support unless I asked for it. I was not really aware at the time that I needed that help. I wish now that I had asked or that someone had taken the initiative to take me to one side and give me some direction. I am sure I would have got my degree if this had happened.

I now live in Cardiff and am regularly in and out of work although more out than in. I manage to get temporary contracts over Christmas periods and always receive good feedback from employers. I work in shops or pubs/hotels and I’m told that my customer service skills are excellent and I always work extra hours when asked. I am honest, reliable and a hard worker. I am also extremely intelligent and am studying to speak French and German at night school. I am currently out of work and very bored!

Two weeks ago I was invited for interview and subsequently asked to work a 5 hour ‘trial’ shift without pay at a large hotel in Cardiff.  I had to ask my mum to send me some money so that I could buy a new shirt, tie and waistcoat for the trial shift.  They insisted I wore uniform. I have phoned them twice now to see if they will give me a contract and they have not returned my call.

The position I trialled for was for bar work and was for a zero hours contract. It makes me extremely angry that I am treated so badly. I really want to earn my own money and I am very lucky that my mum and dad are there to help me out when I really need them to. They will not be around forever and I want to make them proud of me and fulfil my potential. I am sick of being unemployed and bored.

I am happy for my story to be shared on the Wilson Field website. I know I am one of many young people with an invisible disability that finds day to day life challenging.

Mum again

The day after this blog was written my son called me to say that the hotel had been in contact with him to say that his application for work had been successful and have invited him in for an induction session. He has been offered a zero hours contract – relief!!!

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