I am writing this blog to share our experiences of family life with autism (ASD); and also to talk about taking part in the DASLNE project and how this has helped me.

Our son, M, was diagnosed with ASD at 3 years old.  M started missing developmental milestones around 2 years old, most notably his speech and language skills which were almost non-existent.  With the benefit of hindsight and the knowledge I now have, it was obvious that M was presenting as autistic but I had no idea at that point, and although I denied it, I knew in my heart that something wasn’t right.  This was the most heartbreaking time of my life, and after a straightforward diagnostic process (which I know isn’t the case for many other families) it was a huge relief when M was diagnosed with ASD.  M was attending a mainstream nursery at this point: despite the school’s best efforts was a really stressful period.  It was obvious that M could not cope in a mainstream setting, I felt like the leper of the playground, pitiful glances from other parents as M ran out onto the road, not responding to me; or dropping his pants for an impromptu wee (we are now experts at dealing with situations like this!)  We are very lucky that M now attends a wonderful special school in North Tyneside.  He skips off to school each morning (even getting his uniform out on a Saturday!), and I know that he is receiving specialist support and is valued and challenged every day, which is such a relief to me as a parent.

How can I describe M?  He is the most gentle, energetic and (mostly!) happy little boy you will meet.  He loves any form of transport but especially trains, parks, the beach, soft blankets, balloons and iced buns.  I would be lying if I didn’t say that life can be very challenging because of autism, there have been many awful moments, but when we get some eye contact, a word, or one of his ear to ear grins, it is the best feeling in the world.  I would give anything to have a conversation with M, or for him to tell me how he is feeling, things that most families would take for granted, but that feels like a long way off at the moment.  Going out with M can be challenging, but through experience we have learnt what works for M and what doesn’t: for example going to a funfair would be sensory overload for M, with all of the lights, music and people.  M loves to be outdoors, so we spend a lot of time in parks and at National Trust properties, which we find just works for us.  Many attractions also now offer special early opening sessions for people with autism which is so useful- we recently went to the Great North Museum and the Baltic during October half-term.

Following M’s diagnosis, I decided that I really wanted to support research into autism. I personally feel that research is the best way to enhance both our understanding of autism, and the life experiences of people with autism, and their families.  With this in mind, I joined DASLNE, a research project which maintains a confidential database with the primary aim of providing accurate information about the numbers of children living with ASD in the North East.  DASLNE also links parents and professionals, sharing knowledge and information on autism.  DASLNE is supported by the Children’s Foundation.  I received information about joining DASLNE at M’s diagnosis meeting, and I decided straight away that I wanted to join. I think it is so important to have accurate information on numbers of children living with autism, to help with planning service provision for example.  To be honest I was quite surprised that this information wasn’t collected by the NHS or a similar organisation anyway. 

I have also joined the DASLNE Parent Advisory Group which meets quarterly and is an opportunity for researchers to connect with parents, to ask their opinions on various issues, e.g. requests to participate in research or mailings to parents.  As a member of the Advisory Group, I feel like my voice is being heard and l have also found it really valuable to meet other parents who are facing similar challenges to me.  It is also useful and interesting to receive various newsletters and updates from DASLNE via email and their Facebook page; it is hard to keep up with joining different mailing lists independently..