Manchester, UK – ASK-PERGERS? Is a mother and son team who have co-authored two books, run a Facebook and twitter site and who also provide an online advice service to both individuals and families who live with autism and Asperger’s syndrome. Paddy- Joe, one half of the ASK-PERGERS? team is Autism Daily Newscast’ s Voice on the Spectrum writer. Paddy Joe has Asperger’s Syndrome.
This is part 2 of our interview with Jane, part 1 can be found here.
You also tell of your struggle to gain services for Paddy-Joe. I feel that parents still have these struggles today. What advice would you give to parents who are struggling to gain the support and help that they need?
The first thing is persistence: write, phone, email, and get your child`s G.P. to support you with this if they are willing. Keep records/copies of all correspondence just in case you need it at a later date. If you feel the situation is urgent, and no one is listening try approaching your local counsellor or MP. If you have a family member, or close friend who can help you with this, take that help – it can be so difficult juggling your child`s day to day needs, and trying to be all official and assertive with service providers when you have had little sleep, and no time to yourself to organise your thoughts! Top tip – always be calm and polite when dealing with people in authority – this is for many reasons; you will be taken more seriously if you are not aggressive or pushy, you will avoid `getting their backs up`, and you will be in a better place to deal with difficult professionals if you are calm and reasonable, yet still assertive. I took complete control over my son`s education and welfare; he was home educated, and I learned all the physiotherapy and O.T. exercises, and did them with him at home as we had to wait two years for these appointments. Not every parent will feel confident to do this, but do what you can – while you are waiting for professionals to step in and help, time is passing, and being wasted. Learn all you can about autism, from other parents, but especially from autistic people themselves – they will show you the way to go.
Paddy-Joe always says that if it wasn’t for our Reward Plan, and our Transition Techniques books that he dreads to think where he would be today. He is so grateful to his Dad and me for creating and using these strategies, but in truth, I have never known anyone work as hard as Paddy-Joe has to get on top of his challenges, and make the best of his advantages – he is amazing! The transition to university seems to be going as well as could be expected really; Paddy-Joe is travelling to university by himself, but he has a lot of support while he is there. He doesn’t say much about it, but I think things are going ok regarding university. When he arrives home he is exhausted and needs complete rest for a while. There has definitely been an increase in his meltdowns since starting university, which I am finding hard, but we are hoping this will settle when he gets more used to it.
If I may I would like to touch upon your recent autism diagnosis. Why did you decide to gain a diagnosis and what does this diagnosis mean to you?
At the age of forty eight I realised that I have spent my whole life trying to fit-in, yet never quite managing it! I have always found life exhausting; particularly social situations, and relationships. I have spent my whole life trying to be the perfect daughter, sister, partner, friend, Mum, and never tried to be Me – I don’t really know who that is to be honest. It feels like I have read the hand-book on how to be a good friend for example, and stuck to it word for word, never deviating from the text. For example, a good friend always puts others first, a good friend will always listen and not judge, and so on. And I have put myself under so much pressure trying to stick to the rules of being the perfect friend, sibling, Mum etc. that I have lost myself completely along the way! I have severe depression, and my son, and ex-partner are always telling me I am too literal, too pedantic, and I usually find myself feeling very confused by people, not knowing if they are joking with me, or being serious for example. There are so many reasons why I decided to go through the assessment process for autism, but the main one is that a diagnosis of autism would explain my whole life! I am coming to the end of the assessment process, and should find out soon whether the assessors think I have autism or not – but either way, in my heart I know I have.
UPDATE – at time of going to press Jane told us that she had received a formal diagnosis of autism.
Jane ends by telling us…
Thank you for taking an interest in me, and for writing this article Jo, and thanks to Michelle Daly, for thinking I am a Warrior Mum, when I see myself as a good Mum, but nothing special. And thanks to Justine Bailey for the amazing introduction she wrote for my Warrior Mum`s story.
I would like to thank Jane for taking the time to answer my questions.
To find out more about the books written Jane and Paddy Joe, and to purchase them, please visit the Jessica Kingsley Publishers website here Alternatively you can find them on KINDLE where they are approximately half price at the moment:
Michelle Daly’s Warrior Mum blog can be found here
And don’t forget to read our popular articles by Paddy-Joe here on Autism Daily Newscast