Diagnosis: One family's story

Our journey to getting Dylan diagnosed began just before his 2nd birthday when we noticed his speech wasn’t developing like his peers. I arranged for his health visitor to come & see him, hoping she would say something like ‘I was a pushy parent & he was fine’ but that wasn’t to be! She was only in our house a couple of minutes and a look of concern took over her face, she began asking questions & I immediately realised she thought Dyl was autistic. I was very ignorant to autism then & I didn’t realise there was such a huge spectrum & told her & anyone else that would listen that she was wrong.

I then took him to our GP & was re-assured when she told me ‘not to worry, that he was still very young & to just see how he goes’. Unfortunately I stupidly clung on to the words of the GP for around the next 18 months & refused to listen to or believe anyone else’s concerns over his development. There were times when I did worry & despair but just kept re-assuring myself with what the GP had said.

Finally when Dyl was 3 ½ we allowed him to be assessed by an advisory teacher & the report we received from her made awful reading. I still hadn’t accepted that he was autistic but I was now willing to allow him to be seen by paediatricians, speech therapists etc as we were still searching for a reason as to why he wasn’t speaking as he should have been.

We finally did receive a diagnosis of ASD on the week of Dyl’s 4th birthday. My feelings about Dylan’s diagnosis began with disbelief and complete denial and progressed onto guilt, worry, despair, envy, jealousy, more guilt, more worry etc etc. Often I would feel so lonely and isolated from everyone, that no-one else understood the feelings I had, the worry for my child about his future and would ultimately ask myself why Dylan had autism.

Even though by the time of his diagnosis I absolutely knew for definite he would receive it, it still hit me very badly, my heart had been broken and I couldn't even bare to tell close family and friends and chose to email everyone explaining the little info I knew about autism at that time. Thankfully my family have been very supportive and are always keen to learn as much as possible about autism in order to enhance their relationships with him, they absolutely adore him.

I remember walking away from the hospital after getting his diagnosis with a leaflet in my hand for a local support group and nothing else. I felt I should be going home with some medicine to make him better but of course there is no cure for autism. Dyl was to remain on the waiting lists for speech & language & occupational therapy but no other help was coming. His diagnosis did mean we were able to get him a Statement of SEN and ultimately into a specialist provision but that’s another story!

Looking back, my best advice to parents with children waiting for a diagnosis or having just received one is to talk to as many other parents in a similar position as you can. You will learn so much from them & to know you are not alone in this journey is a huge support & comfort. Take all the help offered & shout very loudly for more.

It is ok for you to cry, to question why your child has autism, to look at other children with envy, to feel frustrated & angry & all the many other emotions you will feel, we have all done it but believe me you will come through this and find there is a light at the end of the tunnel.

Its just over a year ago now that Dylan was diagnosed & those feelings of fear, guilt etc are still very fresh in my mind, I can honestly say that it is only very recently that I actually did start coming to terms with, accepting & truly embracing autism.

Thats not to say I don't have bad days still, if we're honest, we all do but even if on those bad days I might wonder why my son has autism, it doesn't mean I hate autism or anyone with it. My son has autism, autism is not my son, my son is Dylan who has autism & I love every little bit of him with all my heart & always will.

You can talk more with Snowdrop, whose story this is, through the Talk about Autism community.