What followed Jessicas diagnosis

Three weeks ago, I received Jessicas Autism Assessment report. I’ve spent the time since then just kind of taking it all in and reading it over a few times. It’s 10 pages long, contains quite a lot of information and each time I read it I seem to pick up on something I hadn’t already.
I met up with the Clinical Psychologist and Autism Specialist nurse, who gave me some time to read through the report, which is quite hard to do when in someone elses presence. The pressure!  Obviously there was no pressure, but it’s a bit like being asked to provide a sample on demand during an anti-natal appointment. Your bladder refuses to cooperate, as does my brain sometimes. Some parts were quite upsetting to read, but I wanted to remain composed and deal with any feelings later on my own.
It’s not easy reading that during the school observation, the psychologist found that Jessica would sit next to, but not interact with other children, or that she doesn’t show any emotions other than excitement. Her ADOS assessment also showed that Jessica would only talk about items or topics she was interested in, and didn’t participate in to-and-fro conversation. I already knew all these things, but it’s different seeing them in print.
The report concluded that Jessica demonstrates a range of autistic traits in the areas of language and communication, reciprocal social interaction and stereotyped behaviours, reaching the threshold for a diagnosis of autism. Along with this, Jessica also has a learning disability.
After a few minutes I started to ask questions, after originally having non. After almost four years of reading up on autism, I kind of felt like a pro. I thought I would just thank them for their help and that would be everything done. But I needed to know how her future looks regarding school. I absolutely love her school and feel like I owe the world to the staff, but there is a little bit of me that remains convinced I could be taking her to the school just down the road myself some day. But the learning disability means that Jessica needs a visual timetable to get through a school day, she needs a quieter environment with minimal distractions to concentrate and visual aids to learn. She learns through seeing pictures rather than hearing words. Her needs may always be too high for a mainstream school. But I do mean it when I say I am absolutely fine with that.
I was also interested to know where Jessica falls on the spectrum. I didn’t really get a definitive answer. I think there is a preference not to classify as children can move about on the spectrum. But from what I could gather I think the general feel is pretty much mild, but almost leading into moderate.
The nurse then stared to talk about Jessica growing up and going through adolescence and how I might need help preparing her for change, and different stages of life. I know all kids need help with that, but more than a neuro-typical child. Something I hadn’t really given any thought to. And about how she is going to need to be taught skills which she doesn’t have or will ever come naturally to her. How to hold a conversation. How to act in social situations. What is and isn’t acceptable behaviour in public as opposed to at home. Just everything. Everything we do and our children do and we take for granted. I’ve pretty much got to manually programme my daughter in a sense. But with the help of support, books and any resources I can get my hands on, I can do it. I’ll do whatever I can to make Jessicas life as fulfilled, enriched and absolutely full of friends, as it should be.

1 Comment

  1. May 11, 2015 / 7:19 pm

    Hi Louise,
    It’s a long learning (and living with) process but I definitely feel that whatever the parent does to support the child makes a big difference. Also, kids on the spectrum can be really different and express it in many ways. We have a 10 yo son with it (diagnosed age 2, mild and people do not always realize). But I also know several other kids with it and they are very different. Our boy is perseverative (totally fixed on an obsessive topic), others may be less so. Ours has some sensory issues (with food), which I see a lot. Our boy has had a lot of problems understanding metaphor/any nonliteral language as well as the social cues and social language and little empathy, but I know other kids with even less empathy but maybe more language. And he is withdrawn and shy whereas some aspies have boundary issues. With girls, that’s tricky bc girls can be so frightfully mean and petty. Daryl Hannah, the stunning actress from the 1980s movie Splash and Blade Runner said she had ASD. She was bullied. I would watch carefully most of all for any girls bullying your daughter or excluding her (for girls bullying includes exclusion as well as ignoring and catty talk. Girls have more sophisticated ways to torture each other). It’s so important for kids to not get their self-esteem trampled on by other kids. I have a daughter who is not ASD but who has social anxiety and went through a lot of pain trying to figure out her place in relation to her peers. Social skills groups help, therapy helps, helping her to be really good at something (expert) to build her self-confidence.

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