To Diagnose, or Not to Diagnose?
Do you think your child may be autistic? Has someone expressed concern or recommended that you investigate the possibility? Have you noticed differences you just can’t explain?
You may be asking yourself whether getting an autism assessment for your child is the right decision.
Will it really make any difference or is it just a label?
Perhaps you don’t see the point, after all there isn’t a cure for autism, no-one can make it go away. Could having a diagnosis actually make things worse? Maybe, you feel frightened for your child’s future if everyone finds out they are autistic. Will other children tease your child for being autistic?
Do you desperately want an assessment, but your partner is absolutely against it and won’t even have autism mentioned?
Or, is it just the huge waiting list that puts you off even trying?
Whatever your situation is and however you are feeling at the moment, it is not a decision anyone else can make for you. I’m not here to judge or tell you you’re wrong, because everyone’s family is different, everyone’s circumstances are unique. I can only tell you about my personal experience and hopefully that will help you to make your own choice.
I Didn’t Think My Child Could Be Autistic
When the word autism was first mentioned to me about my son, I genuinely doubted their opinion and thought they were wrong. I’d had concerns about depression and asked for my son to be observed at school. This person concluded that she thought he was autistic.
In all honesty it was a complete shock to hear those words.
I went along with it slightly half-heartedly, fully expecting someone to disagree at some point along the way. I remember saying “there’s no point wasting my time researching autism when it could be something completely different”.
I don’t think it was because I was in denial that such a thing could be true, but there was definitely a huge feeling of “how could it possibly be autism?” I had it in my mind that it was depression and it was hard for me to see any link. But, hey ho, what did I have to lose either way? At least I’d have an answer.
I Had No Idea There Were Different Kinds of Autism
My only knowledge of autism at the time was that a child wouldn’t be able to maintain eye contact and would be difficult to engage in conversation. A child with extreme learning difficulties and odd twitches or speech delay.
A child that would be obviously different.
At the age of six my son had none of these traits. In many ways he was quite the opposite of what I would have expected autistic to look like.
He was the child who would make friends everywhere he went. He sought out and thrived on social contact. Even during a brief stop at motorway services, he would approach and buddy up with another child. This was in stark contrast to his shy and reserved sister who would stick to me like glue if strangers were around.
At infant school he was doing well and found reading and maths easier than his older sister had, in fact at the same age he was at a slightly higher reading level than she had been. He was articulate, bright and engaging, with plenty of friends. He didn’t appear any different to his peers at this age.
4 Autistic Traits I Didn’t Spot
With the benefit of hindsight, and my improved knowledge I now see he was showing some subtle signs of difference. However, at that age they were easily misinterpreted as typical behaviours.
He was a fussy eater and preferred dry foods such as bread with no butter. He would deconstruct meals preferring to eat things separately.
He was obsessed by the Disney film Cars which he would watch over, and over again. He wanted all the die cast cars from the film and would spend hours lining them up rather than zooming them around.
He would also get upset easily and lose his temper over tiny things. I would say his emotional development was slightly slower, but it was nothing obvious.
At school he could be difficult because he would challenge the teachers rather than accepting what he was told. I think they just thought he was a defiant and naughty little boy and at the time I expect I probably agreed.
Much of his behaviour I dismissed as boyish. His older sister was and still is a very well behaved and balanced child with a strong sense of what’s right. So surely it was just a gender difference. Everyone says boys are more mischievous.
My main concerns were his extremely quick temper, his frustration and his defiance.
That was until he told me he wanted to kill himself.
When your six-year-old child tells you, they would rather be dead, you know something is wrong. But would you ever think it might be autism? I certainly didn’t!
Despite my reservations, I made a GP appointment and asked for a referral for an autism assessment, as I had been instructed to do. Then I simply got back on with my life. Nothing significantly changed in terms of my parenting in the year I waited for the appointment to come through. However, there was a huge change at school.
Don’t Let Your Child Slip Through The Cracks
My son moved up from infant school to junior school and although he was given some extra transition support, he was simply labelled as ‘vulnerable’. His issues were described as low self esteem.
I had been completely open with school about autism being suspected and I’d expected the information to be passed on accurately. The infant school staff were involved in arranging and facilitating the initial MAST meetings. I’d updated them with my progress and they were fully aware that I was waiting for an assessment for autism.
For some reason, that I will never understand or find out, that information was not communicated to the right people. Or if it was, they chose to ignore it. So, he started his new school with zero acknowledgement of autism. I was blissfully unaware of this and assumed that everything was as it should be.
Right from day one at junior school he really started to struggle. His behaviour was becoming a problem and he was refusing to do the work more and more regularly. At my first parent evening his teachers bombarded me with a barrage of complaints about how naughty he was, that he wouldn’t do anything they asked and how he wouldn’t do any work.
They made me feel as if I had the worst behaved child in the world. I was surprised and upset by the way they were describing my son.
I asked them if they were aware that he was waiting for an autism assessment.
Now it was their turn to be shocked.
He had spent 2 months at that school and his class teachers had not been told anything about autism. They had just decided that he was naughty and disruptive and bad. They were judging him on his behaviour rather than wondering why he might be behaving differently. Instead of looking at support they were thinking in terms of punishment.
I can’t blame his class teachers, they had not been given any information. This clearly illustrates that an autistic child can easily be misunderstood and treated unfairly if they are not diagnosed or even misdiagnosed. Even though we were going through the process, my son still slipped through the cracks.
The Steep Learning Curve of a ‘Special Needs’ Parent
It was a hard but extremely valuable lesson to learn that I should never assume anything. That I could not expect information to be shared. I could not rely on anything anyone told me to be the truth or that anything would happen automatically. I would need to check everything and I would have to take personal responsibility to avoid mistakes happening again that would negatively impact my child.
I felt so guilty and cross with myself because I didn’t know I had to check. I didn’t do the research soon enough. I didn’t work it out for myself until I was driven to it through utter frustration with the system. It took me years to realise that nobody was going to help him unless I knew what I was doing. It was down to me to fight for him, to cut through the bullshit I was told, to find the facts and to make his life better.
Why an Autism Diagnosis is Not Enough
In total it took a year to get the assessment and almost another year to get the final diagnosis, but it didn’t end there. In fact, the diagnosis was just the start of the battle. It most certainly was not the fairy tale ending I thought it would be. In my mind it was the answer I had been waiting for, the conclusion I wanted. But, rather than triggering a whole series of support and treatment it was just a diagnosis.
A piece of paper confirming what by that point I already knew. No prescription, no instructions, no support and no treatment.
I have never felt so alone and abandoned. I have never felt so deflated. Nobody came to rescue me; nobody offered to hold my hand and guide me through the minefield. Nobody told me what I should do next. I had to figure it out for myself.
For us it was still the right decision to get a diagnosis.
- Without an autism diagnosis I wouldn’t have been able to get the adjustments my son needed in school.
- Without an autism diagnosis my son would have always been seen as the naughty boy in class.
- Without an autism diagnosis I wouldn’t have done the correct research into why my son is different.
- Without an autism diagnosis I wouldn’t have understood my son and been able to change my parenting.
- Without an autism diagnosis my son would have grown up feeling like a failure.
- Without an autism diagnosis I might not even have my son anymore.
I am eternally thankful that I fought for his diagnosis and I’m absolutely sure that his future is more positive for having it.
Love and Hugs,
Nadine
xxx
Where to next? Why not read What is Autism Anyway?
All content created for and written by myextraordinaryfamily.com is based on my own personal experience as an autism mother, partner and advocate. I am an expert by experience and do not have official qualifications in autism. I live my daily life constantly learning, supporting and advocating for my neurodiverse family and speak from this point of view. Any advice given is purely based on what has worked for me and my extraordinary family and I offer no guarantees that you will have the same results with your unique family.
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