By Laine Perks
When I look back and think about the diagnosis process I am so glad we followed our instincts and went for it. I suppose with the ability to talk and the language skills the girls have, they were diagnosed relatively early in their lives both age 7. For this I am so grateful. We could gain knowledge and an understanding of the way in which their minds work from an early age, we could work with them to develop strategies to support and encourage them to be the best version of themselves and to cope with the world.
Connie is now 11 years old. We had our concerns when she started at nursery around age 3, her exhaustion after any socialisation, her selective mutism, her need for routine and her sensory sensitivities were becoming more obvious and we were sure these challenges were not just down to her visual impairment. Not long after her 5th birthday we attended the neuro-disability and visual impairment clinic at Great Ormand Street hospital. After an assessment, the conclusion was reached that Connie didn’t meet the criteria for an autism diagnosis. This felt like a devastating blow. We felt we had to continue as we were and simply encourage Connie ‘to get on with life.’ I started to think that these issues could be because we weren’t doing the right things for her and it really made us assess everything that we did with Connie, I can’t say that this was an easy time for us. We muddled on meeting her needs as best we could until the meltdowns and challenges built up to the point where we couldn’t carry on. We were all struggling so much. We secured another referral and in May 2013 when Connie was 7 years old she had a second assessment.
They concluded that Connie has autism.
I wanted to both cry and cheer when the news was given to us. It was a real yay/boo moment. I was sad thinking this could make life overwhelming and present future challenges, sad that I had believed the results the first time and perhaps pushed Connie to try and be more like her peers, but at the same time we were relieved. The diagnosis meant we could seek out the information to support her accordingly, we knew for certain that we had to allow Connie the chance to show us how she could access the world at her pace and we haven’t looked back since. I felt that recognition gave us the permission needed to guide her to achieve things her way and it removed the pressure for us to try and make her conform. The improvement in her engagement and understanding since we have changed our path has been tremendous.
In the same year of 2013 we were noticing traits of a similar nature in her sister Pepper who was then 4. She wasn’t coping with life in general, we could see obvious differences between her and her peers, we spoke to various professionals and it was agreed to wait and watch her development to see how things went through the first year of school. Reception wasn’t without its challenges but we just about got through! In year 1 things got trickier for her, the demands increased and it was clear to us that she wasn’t developing like the other girls her age. The assessment process started not long after that and 19 months later the conclusion was reached that Pepper also has autism. I know, who knew right? Oh yes, we knew, and so did she! This time there was much less sadness. I already knew how best to support her.
The diagnosis process was different this time, meeting with specialists for assessments, and waiting. Lots of waiting. It felt like a roller coaster of emotions waiting for a diagnosis for Pepper, I was constantly questioning myself, her behaviours, wondering if we were facing another rejection of our concerns, and after diagnosis the hardest thing of all is that we had to watch avoidable situations happen, watch our girl reach rock bottom, watch her self-esteem suffer during the agonising wait for someone to agree that our girl needed a specialist placement for school.
So, if this is where you are at right now, keep going, keep speaking to anyone who will listen, and I am sure, if the criteria for a diagnosis is there, getting them diagnosed will, in time, improve the situation, improve the support available and will help your child understand who they are. Pepper is almost 9 years old now and doing so well, we are so proud of her.
I feel like one of the lucky ones, my girls have a diagnosis, their needs are recognised and they are supported so well in their new school, the label autism gives them a reason, the understanding of why they are the way they are and they also have a peer group that they fit in with!
If you, or your child wants to know more about diagnosis I want you to know that no matter how hard it may feel to go through it, no matter how many obstacles you may feel are in your way, for us, it has been so worthwhile. I would, and maybe will do it all again. There is support out there, there is now so much information available to you and knowledge is power.
You have the opportunity to really find out all you can and with the right support and strategies I know that anything is possible.
We have asked our guest bloggers for their opinions. This blog represents Laine’s own views.