I thought it would be a great blog post to interview my mum to get her perspective on what her life has been like having a child that is Autistic and who is now an adult.
Q1. Did you know much about autism before Nick got his diagnosis?
I was not aware that he had autism but I did suspect that this may be the case and it was myself that suggested to Nick to get a diagnosis albeit that he was nearly 40 years old.
When he went to our then GP the GP tried to say that he doubted if Nick did have autism as surely it would have been picked up earlier.
I suggested to Nick that he insisted on a specialist appointment so that he would know for definite.
The specialist confirmed what I had suspected.
I am disappointed that doctors don’t realise that there is a whole generation of adults who were never diagnosed as children and they are wondering why they are different.
Q2. Did you always think or have a sense that Nick might be autistic?
Nick from a very early age was ‘different’ to other children. He was an early learner, telling the time by the age of three and reading at four. He would often walk around reading and would read at least one book per day.
However intelligent he was he did not thrive at school and was often bullied.
I reported this to his school but their reaction was not good (I don’t think that bullying was taken seriously 30 odd years ago!) I took Nick to numerous educational psychologists – one advised that he had low intelligence but would catch up!
Another advised that he had issues with processing information but would ‘grow out of this’ by the age of 18!!!
I got varying reports from other specialists but none indicated that he had autism –
I accepted that they knew what they were saying as they were professionals. Nick’s struggles continued throughout his teenage years – the bullying continued and his studies suffered.
We (the family) tried our hardest to protect him but as the bullying mainly occurred at school, even though the school was aware the school system let him down.
One particular subject he found hard was maths so I organised for Nick to have private tutoring for maths and although his school didn’t want him to sit the maths exam (something to do with their stats) – I insisted he sat the exam – I got a lot of opposition from the principal but I stood my ground and well done to Nick as he passed the exam.
Q3. Once Nick got his diagnosis did you feel a sense of relief or dread?
I was relieved for Nick as I hoped that he would be able to access professional help and this might assist him in understanding why he feels different to other people. I believe that Nick is still trying to know who he is in this world and looking at support from other groups.
Q4. What is daily life-like for you with Nick?
Nick lives with myself and his sister – we love him dearly but he doesn’t always let us in to his world – he likes to spend time on his own and we don’t always know what is going on in his brain. We try to help Nick with strategies on living in a highly complicated society and the world that Nick sees only as black and white.
Our family is not the average 2 adults +2 children – its 3 adults living together and we do sometimes clash so we have family meetings where the three of us discuss any issues and try to see the other person’s point of view.
We are all working to be aware of what we can each do to make life better for each other.
We have to think about how we talk to Nick as he is very sensitive and can sometimes take comments as criticism when they are just observations. Nick likes structure to his day and gets anxious if things that are planned get changed, sometimes this is inevitable but he gets stressed by the changes.
He likes his day planned, time for breakfast, what he has for breakfast, time for exercise, time for lunch and what to eat for lunch (and in what order he eats his food!) etc, etc. Changes to his routine can make a big difference to his mood and this then effects our moods.
He can appear to be sarcastic or rude at times, we are aware that he doesn’t mean to be but I am always conscious of what a stranger would think. We try to explain to him how his comments could seem to someone else.
Q5. Do you ever think that life would be easier if Nick wasn’t autistic?
Yes, certainly for Nick so that he wouldn’t have to constantly think about how he is perceived or worry that he might be upsetting someone.
This is mentally exhausting for Nick, day in day out and as a consequence he suffers with depression and anxiety – he is struggling to find employment and the constant rejection makes matters worse.
His passion is writing and I hope in time that he will find a job in media that he will enjoy and live a happy and healthy life accepting that we are all ‘different’ in some ways but we all have something to offer.
Q6. How do you cope with having two disabled adults living with you?
Nick and Jenny have very different disabilities. Jenny is physically disabled after suffering a brain haemorrhage. However, they get on well and support each other. My role is to support both of them in very different ways, and to be honest I don’t find this difficult. I love them both very much. In fact, the three of us support each other.
Q7. What advice or tips can you give to other parents whose child is autistic on how to cope?
Early diagnosis is paramount. You need to be patient and never give up! When Nick was a child autism was less recognised and consequently there was little support. Although I sought help it didn’t materialise into effective results for Nick.
Q8. Do you have a message for autistic parents?
Having an autistic child can be challenging so get all the support and information you can. Try to keep life as normal as possible and with the right help and support the future should be bright for them.
Although autism is still not fully understood there are more opportunities than ever before to help autistic children to lead fulfilling lives.