Published on 12, July, 2020
Hello everyone, I probably should have signed-up to this sooner but I had no idea that getting a diagnosis on the NHS would be so difficult.
Now, I need to reach out because today I have two children off School and a stranger wouldn't see anything wrong with them...at least not to look at.
My eldest attends School half-day due to selective mutism. She has spoken to one other pupil in her School and is in Primary 6.
Our second ticks all the boxes for Pathologic Demand Avoidance but people involved with the family haven't even heard of it and the School offer no back-up/evidence that health professionals like paediatrician seem to rely on.
Our third didn't make eye contact until 2 years old, nothing and not a word. We didn't hear "Mummy" until after two. Now he literally doesn't shut-up and what comes out of his mouth is usually random nonsense. He is very loud and can shout all day long for fun even when everyone around him is cracking up because of it.
Our four might be just fine.
I see people getting diagnoses for children as young as two and I'm reminded that diagnoses aren't everything because the daily battles are going to be exactly the same. However, how we treat children with these conditions and how the School is expected to handle them does change. That is where the ultimate frustration starts to kick in for me anyway. If we are right, one of our children has PDA, then their entire upbringing could be wrong but because we believe in it. We handle her just as if we have a diagnosis.
Despite the severity of our eldest daughter, our son has been refused diagnosis because at four he is learning primary one level maths, he is chatty and making eye-contact. What they can't seem to understand is that all of that progress is due to our massive effort on a daily basis. Just as an example, I would wrap my arms around him, being the strong man that I am (haha!) I could squeeze him firmly. This forced him to think about all of the contacts and over time he gradually looked at me, eventually making eye-contact and learning that it was fun because what comes next is...fun.
So we are on a rollercoaster right now and we have struggled. My partner and I have almost separated. Support is a hit and miss. We had a family support worker who introduced shaving foam to keep our son busy (with good intentions obviously) and let's just say it didn't go as they imagined. Everyone imagines ways to show us how to deal with our children and has ideas about how to handle "difficult" children. Despite our endless videos of us spending time with the kids, crafting, covering the house in orbeez, floury foot steps all over the carpets, boxes full of crafting materials.
They just don't seem to accept that we are parenting.
I am Ryan, stay at home father of four for ten years and I am parenting.
Hello Ryan and welcome to the forum.
I suspect that you haven’t so far received a reply because it is difficult to judge exactly what you are inquiring about.
NAS does offer a parent to parent service which you can find here. The NAS helpline can be found here.
I would suggest that it is not good to force an autistic child to make eye contact. There has been a lot of research which demonstrates that encouraging an autistic child to ’normalise’ their behaviour can lead to later problems such as PTSD.
If you wish any further information, please ask. Just try to be specific, as mindreading is not one of our strongest points. : - )