People, myself included, often ask each other “what do you work as?” or something similar to get to know the other person. I used to say “I’m a specialist Learning Disability Nurse'' with great pride, although now I don’t always know how to answer. I worked from graduating (I’ll throw in that I got first class honors because well why not…) until going off on maternity leave with my triplets. For numerous reasons, I have never returned to nursing. I am currently on the emergency covid register in case I can ever help in my area. However, I haven’t worked since my kids were babies! Despite that, I do still have knowledge of some of the things that challenge our beautiful little boy.
Jacob has numerous conditions that I won’t even bother listing because in all honesty, they aren’t actually even that relevant here. Something that has become more obvious as he has grown, is a shift towards patterns of behaviour that some would say are consistent with children on the autisic spectrum. Why? For a few different reasons like him being sensitive to noises, and textures. He is also quite rigid in his thinking, having stereotypical repetitive behaviours such as hand clapping, and only eating certain foods.
It was decided that he was probably on the spectrum and should be assessed as such.
His neurology team found out that despite three EEG’s that showed clear epileptic activity, some of his seizures were non epileptic in nature. They looked like his epileptic ones, but they simply weren’t. With all the other “signs”, it was decided that he was probably on the spectrum and should be assessed. What did his mum, a trained Learning disability nurse, say to that? No thank you.
The reason I said no was because I don’t feel Jacob being diagnosed with Autism would assist him in any way, at this point in his life. I have absolutely no difficulty admitting he may be on the spectrum. I will never think less of him (or anyone else) for that reason. If I did I’d never have gone into the job I did. In saying that, I already rhyme off a lot of conditions when talking about Jacob to his various professionals. There does come a point that he is lost in the process and overshadowed by his conditions.
I know the things that would be put in place to help him with his behaviours, but we do them at home anyway. So why label him?
I know the things that would be put in place to help him with his behaviours and do them at home anyway. So why label him? His school are aware of my views on this and they agree that while he isn’t formally diagnosed, they treat him as if he is autistic. There are so many amazing people with autism who have inspired me and I would be so proud to say my little boy is one of them. The time to say that just isn’t right now, at this point in his journey. That doesn’t mean I feel less of families who make a different choice in similar situations at all. Thankfully the only person I really have to answer to about this is my son. I am fairly sure he will understand in the future that his stubbornness is from his mama and we’ll wait until it is right for us, not the medical professionals.