A Parent's Perspective
So, lets talk about autism. In fact, lets talk about an autism diagnosis. So does a diagnosis matter?
As a parent many things run through your head when you suspect or receive the news that your child may be on the autistic spectrum and should be referred for an assessment.
Do I want to know?
Is it worth it?
What difference does it actually make, it won’t change them?
I have an almost 16 year old son. Diagnosed with autism during lockdown over Zoom when he was 12.
So what was life like pre-diagnosis?
Pre-diagnosis, I’ll be honest. Life was tough. Brutal at times. We were all struggling. Life was becoming more and more difficult. The lack of routine at weekends and holidays made these times difficult. Leaving the house to go somewhere created anxiety and we were always late. There were places we didn’t go and things we didn’t do to make life easier. His two sisters missed out.
There were frequent meltdowns. Despite the need for routine, getting to school was becoming more and more challenging for my son. The transition to high school was the straw that broke the camel’s back. His behaviours were becoming more and more concerning as the anxiety he felt over attending school began to grow. Whilst on the SEN register already, the full extent of his needs were unknown.
His mental health began to rapidly deteriorate and he started to be unable to attend at all. His behaviour became more and more controlling as his anxiety and depression developed. An urgent referral to the GP for mental health support was made and that weekend he ended up in A&E. 5 days of intensive crisis care followed. At this point, autism assessment was finally mentioned. After years of being dismissed by professionals, finally someone else saw what I saw. The relief was immense.
This whole process impacted everyone. I gave up my job as I was unable to work. Family finances took a hit with the loss of my salary and I lost my financial independence as well as a 13 year career. Having worked ever since becoming a parent, I became a full- time carer. A year’s wait followed until finally, the diagnosis came.
This story isn’t unique to me. It’s repeated across the country. Thousands of families are currently waiting for an autism assessment and support, both for their children and for them and their families.
In June 2023 the proportion of children in England between the ages of 0-17 with suspected autism who had yet to have a care contact even recorded before the NICE guideline of 13 weeks stood at 74.53% Autism Statistics, April 2021 to March 2022 - GOV.UK (www.gov.uk)
That’s a huge number of families and young people potentially struggling their way through life, trying to navigate the world of SEND, trying to get support and understanding for their children.
So did it make a difference?
In short, YES.
Whilst hearing your child has a lifelong al condition can be difficult to hear it was, overwhelmingly but a relief. All of a sudden everything made sense. To know that the hours of time sat on the floor next to your child, holding their hand waiting for them to go to sleep was not the result of a “poor bedtime routine”. Or that the reason you were always late to events was because your son was on the verge of a meltdown due to feeling anxious and overwhelmed and not because they were being "difficult" or “awkward”. Relief that finally professionals and human beings other than you recognised that there was something else going on with your child. That someone else got it.
And with that came the understanding, and the help and the support. And yes, sometimes the tilted head and the sympathy eyes and the “I’m sorry to hear that”. When you are very far from sorry to hear that. When that is what you’ve been wanting to hear for a long time. For some recognition and understanding that things were not easy and that you weren’t simply exaggerating or being overly anxious.
For some parents though, diagnosis may come as a surprise or as a shock and invoke feelings of “What did I do wrong”, “Was it my fault?” and these experiences must also be recognised. But with diagnosis comes the knowledge of knowing that none of these things are true.
You did nothing wrong.
It was no one’s fault.
Our children are just wired differently.
But difference can be amazing. My son wouldn’t be the compassionate, kind, computer obsessed, frequent hugger of humans that he is without being autistic.
Acceptance.
But yes, there’s no getting away from it, parenting an autistic child/teenager can have its challenges but there is so much to be positive about. With diagnosis comes acceptance. Acceptance that actually this is who my child is. That your child is the person they are because of who they are. And for the child themselves, crucially, in my experience, acceptance of who they are.
And that was huge as with that acceptance comes understanding.
In the days after my son’s ADOS test but prior to his formal diagnosis, anxiety levels rose as he wondered whether he was, indeed, autistic. For him, knowing that he was autistic was a total gamechanger. Knowing his brain just behaved in a particular way explained so many things to both me and to him. He was calmer, more accepting of who he was and able to explain to himself why he often felt or behaved the way he did. It was a quiet revelation.
Diagnosis also meant that he began to develop his self-identity and his social skills. For him, social contact with teenagers his own age had dwindled and he had become very isolated. Meeting other neurodiverse teenagers through school meant he began to bond with other people who “were like him”. Having friends became much easier – these new friends “got him”. Slowly his confidence and then his social circle increased. Suddenly he was leaving the house, playing football in the park and going to the gym. Things that had previously been unheard of. Don’t get me wrong, there are still days where life becomes too much and the shutters come down. For example, a trip to Tenerife on holiday in 2021, when three days in, being away from home became too much and the pair of us had to fly home, leaving his two siblings with extended family abroad.
Diagnosis also made a difference to his two siblings. The two girls who had steadily watched their elder brother get more and more anxious and unable to cope were able to better understand why their brother behaved the way he did and why their lives were sometimes different to their friends. It opened support for them too through access to young carers. I also hope that it taught them more about being compassionate and accepting of difference.
Diagnosis also brought more understanding at school. Whilst his mainstream school were aware and tried to be accommodating of his needs, diagnosis brought further understanding and support. Extra accommodations were put in place and there was more understanding of why he behaved the way he did. An EHCP was put in place and whilst these are based on need and not diagnosis, having that diagnosis meant support could be further targeted. Diagnosis also brought access to additional support including access to the local autism team.
Referral for assessment also meant that all of a sudden, help was being offered. Financial help. Having given up my job to care for my son, being awarded DLA and subsequently carers allowance, was an essential addition to my finances. Whilst also based on need not diagnosis, the fact that a referral was in place helped provide evidence of his needs. Further evidence on diagnosis meant that this support was awarded until his 16th birthday. It gave some financial security to me and also opened up pathways to other financial support.
So was it worth the wait for him?
YES. Totally.
In every way. But many parents are currently facing waits that are twice as long, if not longer. bMindful offer autism assessments with appropriately trained and experienced practitioners, all registered with the HCPC and which follow the NICE guidelines, two conditions required for acceptance of private assessments.
And as for me, was it worth it?
Well, that diagnosis changed the course of my life too. I wouldn’t be sat here right now, writing this. Diagnosis meant my son got access to a school where his needs were met and supported and he began, finally to thrive. The result for me - my independence back. Inspired by him I went back to University for the third time, completed further study and took a sideways career move. It gave me the ability to work again in a career where I could use the education and experience where I get to support children like mine.
So worth it?
Absolutely.
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Brought to you by: Child Psychology Service Manchester