Autism … such a big word, but what does it actually mean?
Six months ago, when a family friend pointed out that she thought our son Grayson was autistic and had thought so since he was a baby I was livid. I didn’t sleep for two days, I cried until I had no tears left. Who was she to try and tell me that my son was autistic?! Surely my husband and I would know. We never did the whole comparing him with other children. He reached all of his milestones, being able to say “mummy” & “daddy”. He was walking unaided before he turned one. He was counting to 10 and climbing the stairs. Other than the occasional screaming here and there in our minds, our little boy was happy.
It wasn’t until we put him in nursery one day a week things started to unfold. One evening after my husband had collected Grayson from nursery they said to help him settle they were going to keep him back in the toddler group and not move him on when he turned 3. They asked if he spoke at home because he wasn’t really talking at nursery or mixing with the other children. Confidently we were able to reel off all of the achievements he had made and what he does say at home and explained that he’s not much of a talker but he loves to sing. They said they would like to have a speech and language therapist to come and work with him. Just to help him feel more confident with talking to people at the nursery. We thought about this and figured if it would help him feel more at ease and build his confidence then we’d let the therapist work with our son.
After a few weeks, we received a letter confirming Grayson’s appointment with the therapist who explained that her assessment of him would determine how we could help him at nursery. She asked to meet with me beforehand for an hour to discuss what he was like at home and how he communicates with our family members and friends. The 2nd of November came around fast and I found myself slightly apprehensive and nervous sitting in an office at the nursery waiting for her. When she arrived she was lovely, warm and took a genuine interest in finding out all about Grayson, this put me at ease and helped me open up and talk candidly. After a series of questions and note taking the therapist explained that she specialises in working with children with autism and based on some the repetitiveness he was displaying she felt Grayson might be on the autism spectrum. My heart sank, then the feeling of guilt set in. Our family friend was right and we had not been proactive enough to have him diagnosed, it was all my fault. My mind was racing… I thought what if he gets in with the wrong crowd of people when he’s older and they take advantage of the fact that he’s autistic. How will we protect him?
Leaving the nursery, I was in floods of tears. The therapist called me back by the time I got to work to confirm that in her opinion my son was autistic and that the next step would be for the paediatrics to see him. She assured me that we will get support, she would be doing home visits and she said to remain positive as she feels after spending a little bit of time with Grayson he was responsive and open to learning. She said most parents dismiss her and don’t want to know more, others want all the information and are proactive with how to help their child. I now needed to decide what camp we were in. Just saying it out loud to my work colleagues made it all real.
When I got back home and had a lengthy talk with my husband we knew that whatever being autistic means it will not define our son. He is still the same happy, caring and loving little boy that he was 5 minutes ago. Yes, we get rude comments and stares when we do the food shop and he screams or gets upset if he feels overwhelmed. Yes, we have had the neighbours complain, making us feel unwelcome in our new home by harassing us about our son crying and how they’re dreading time off work because they don’t want to be subjected to a child who makes a sound and is autistic. Yes, it is hurtful when people go out of their way to be openly rude because they think our child is being naughty and disruptive.
Yes, I sit witnessing it all because I frankly could give zero fucks about what anyone else thinks! I am blessed to have kind and caring children. I am grateful that my son is only 3 years old and doesn’t understand the hurtful things grown adults are saying towards him and just how unkind some people can be. I am blessed to have such a great support system with our family and friends who embrace the wonderful little human that he is. Will I always feel anxious when we get invited on play dates to the cinema or pantomime because we don’t know if he’ll sit for that long? Maybe … all I know is that I want Grayson to experience everything that children his age enjoy doing and look forward to watching him grow up being his OWN person.
Read what happened next – Autism Diagnosis, is the wait over?