DIAGNOSIS DAY | OUR AUTISM JOURNEY | A PARENT’S VIEW
I first noticed something was different about my middle child Mikey, when he was almost two years old. He wasn’t quite hitting the milestones other children his age were reaching and although I’m not one for comparing, some of his differences were becoming unavoidably obvious. Family members and friends often commented on his avoidance of eye contact, his inability to play with other children and they assumed he was deaf.
September 2016 When his baby sister was born in, one month before his second birthday. My health visitor came to do a check-up on Nicole and I mentioned my concerns about Mikey’s hearing, so she referred him to Audiology. Whilst waiting for his hearing appointment, I took more notice of the different behaviors Mikey was displaying. These traits were actions I’d’ become used to and always seen as a part of Mikey so I’d never taken much notice until now. His hair twiddling, meltdowns, avoidance of eye contact, lack of speech, loss of developmental milestones and sensory seeking, kept bringing me back to one answer….Autism.
October 2016 Anticipating the outcome of Mikey’s hearing test left me with anxiety. Of course I didn’t wish for my son to have hearing troubles, but if everyone who had been adamant he had a hearing impairment or had “glue-ear” were right, that would answer our worries. It’s not that I’d choose it, but I’d have my answers, the support would be for his hearing not for a diagnosis of a condition I had not idea about.
He passed, with flying colours. So there I had it, it wasn’t his hearing, which I was relieved about, but now my anxiety was through the roof about what the next steps were. Following a discussion with my health visitor, she agreed with me that he did need support for his “developmental delay”. You see, it wasn’t only the milestones he wasn’t reaching, but he was also losing the ones he already had. The words he had previous said, the actions he had made steps forward with were disappearing in front of my eyes, I needed to know why and to get the support that my son needed.
January 2017 The next steps were a referral to Portage, a speech therapy drop-in and the start of nursery. It seems like a lot, which it was, but for the best. Portage is a home learning service, a “portage worker” comes into the home, brings toys and teaches communication and builds the child’s confidence through play. This began in January and we were told would finish the term after he was three, which would be Christmas time 2017. For Mikey to get Portage in the first place, his “case” had to be taken to a panel who decided if he would benefit from it. They initially came for a home visit and then the sessions continued weekly.
The speech therapy drop-in was a great opportunity to get some insight into why Mikey wasn’t talking, getting advice and then being referred for further sessions at our local children’s centre. We were sent home with work sheets, to help us to communicate with Mikey over the next few months before his next session. Nursery brought me a lot of anxiety, I really wasn’t ready for him to go. When Jack went I wasn’t ready to go. But this wasn’t about me, it was about Mikey. Jack loved nursery when he went and Mikey, the child who screams and throws a ten minute meltdown if I walk out of the room, ran off and left me without a backward glance, we started slow but quickly increased his sessions to doing three morning a week just like Jack. Starting nursery was to build his confidence, for him to be around other children and learn.
September 2017 One year after our journey to find the right support with Mikey and to find out why he behaves the way he does, we had a good idea in our minds what we were dealing with. With the support and opinions of my health visitor, nursery, portage worker and speech therapy, plus a lot of online research. It was obvious to all of us that Mikey has Autism. I don’t know how you’re supposed to react to the realisation that your child has Autism, I suppose everyone is different. I never had a shock moment where it was sprung on me, it was a thought in the back of my mind from when I first voiced my concerns. But it’s one of those things until a professional confirms it, you don’t really believe it yourself. I mean I’m no doctor, I have no experience with anyone who has Autism, but I knew my son. I knew Mikey, I didn’t need experience or a major talk about how to deal with my son having Autism, because I’d already been doing it since the day he was born. Going for his first Paediatrician appointment, I was surprisingly excited, as to be expected slightly nervous, my only worry was that she wouldn’t believe our concerns. That she’d say he didn’t have Autism, because as his mother I already knew he did. Living with him 24/7 it was obvious to me, but him going into a room for half an hour could go either way. Although people don’t like to label, which I totally agree with, in the long-run having the diagnosis for a child with Autism is very important when it comes to receiving support and going to school. My concerns were for nothing, the paediatrician was amazing and totally agreed that Mikey has Autism. Although she couldn’t formally diagnose during the first appointment without their own speech therapist seeing him and receiving a report from Portage and Nursery, she was certain that’s what we were dealing with.
Autism is an invisible Disability It feels strange to say I was relieved, having Mikey’s Autism confirmed was a complete weight off of my shoulders. She told us to apply for Disability benefit, because we make so many adjustments for Mikey and spend so much on sensory toys and classes for him. I didn’t even know you could apply without an official diagnosis but she was surprised we hadn’t applied for it already. I felt so guilty at first applying for it, I don’t know why because it isn’t for me it’s for Mikey and that’s what we use it for to buy Mikey sensory toys, DVDs that calm him down, gymnastics classes, dancing classes, swimming and any other activities or items that can make life that bit easier for him.
I suppose I felt guilty, because of the stigma that is attached to applying for disability benefit. Especially because Mikey’s Autism is an invisible disability, he isn’t in an obvious wheelchair or doesn’t have a physical impairment, although just walking down the street can be just too much to bare for him, if people can’t see it they seem to judge. Not so long ago a complete stranger chose to butt-in during one of Mikey’s meltdowns, telling him that Santa Claus wouldn’t bring him any presents. Once again, my child was viewed as naughty, usually I’d reassure myself that the person doesn’t know Mikey has Autism, but this time I snapped. So what if she didn’t know Mikey has Autism, that he is non-verbal so has no way to communicate, the fact she has no idea means it is none of her business. I snapped and chose to tell her very loudly that my son has non-verbal Autism but is very aware of what she is saying, so she should be aware she’s just told a vulnerable child who is having sensory overload that Santa won’t bring him any presents, safe to say she dipped her head and walked off (so she should), hopefully she was ashamed and would think again before judging an innocent child.
December 2017 Here we are a few days from Christmas time 2017, it’s a bitter-sweet time. Christmas can be difficult for those with Autism, everything is different, everyone acts different, places look different, there is anticipation in the air and sensory overload can take place almost everywhere at this time of year. Mikey has taken a liking to Christmas trees and Santa Claus surprisingly, he seems to be coping quite well, whether that’s because he has his brother and sister who are 4 and 1 to keep it fairly normal and distracting at home. As I said before, Portage was due to finish at Christmas time, which when mentioned seemed like a lifetime away but almost a year with Mikey’s wonderful portage worker went by in a flash. He learned so much, I wrote a post about it that you can read here, there is way too much to mention in this post. It was a very sad time to finish Portage, both Mikey and us loved every moment. Then today was the appointment I’d been waiting to get for three months, I had a strong inclination that this would be his diagnosis appointment. Although we already knew Mikey has Autism, we weren’t desperate for him to have a label, this wouldn’t change him one bit, but for professionals and further support it really does help having an official diagnosis. Plus there is something about having it officially on record that gives you as a parent a “Pheww” moment, of course that’s not the case for everyone, but for us it was. There is a long road ahead, the rest of our lives. We like to look at Mikey’s Autism as a gift, he views the world in a unique way, although he will have difficulties that other children wouldn’t have to deal with, he will find other things simple that neurotypical children may struggle with. I know this isn’t that case for everyone, because everyone’s day to day life is different. But just as Jack and Nicole are their own unique people that we will support no matter what, unconditionally, Mikey is our special little gem, who makes us laugh, cry and learn every single day and we wouldn’t change him for the world.
Are you looking for Autism support within the UK, we recommend contacting Clearly Speaking, Specialist Children and family centre in Buckingham, ran by special needs consultant Janet Nicks. Find out more at clearlyspeaking.org.uk