Published on 12, July, 2020
Hi all,
my 3.5 year old son received his autism diagnosis today. He has many of the symptoms and we had concerns from when he was just over a year old. Even though we knew it, it is difficult to hear and it brings lots of worries about his future.
my son is verbal but minimal social communication, never instigates conversations or asks questions, mainly just labelling things. He has difficulty understanding instructions and is therefore prone to tantrums etc. He loves numbers and shapes. He’s has speech and language therapy for over a year which has brought his speech on but still his main vocabulary is 1 or 2 word requests.
just thought I’d reach out as I’m sure many on here share similar experiences and hopefully some of you have come out the other side and are in a more positive frame of mind.
M
Hi
It’s really good that your son has got a diagnosis and got it relatively early. It’s so important to have the diagnosis so that you can gain a really good understanding of his needs and get him the appropriate support. So that’s already an achievement. I have two adult children who are both autistic, and I’m autistic too. My youngest didn’t get a diagnosis until he was 10 - and my eldest not until they were in their mid twenties. So you’ve done well to get this address nice and early.
You might find you’ll sometimes have to fight to get your child the help they need in school. Do as much research as you can. Above all though listen to and be super attentive to the subtle signs and signals from your child about what they need, and what they struggle to cope with. You need to be in tune with your autistic child because you are their advocate and will be representing their complex needs to people who might not always understand. I’ve never met a parent of a child with SEN who didn’t sometimes have to battle to get their child’s needs met.
When in such a ‘battle’ always try to maintain your calm and build strong relationships with teachers etc. It can be very difficult and emotional - especially when they’re not meeting your child’s needs - but try to keep it as positive as you can so that the relationship doesn’t become difficult. At the same time: be firm about your child’s needs being met.
Sorry - the above may sound very negative! On the bright side my children have been an absolute delight and I wouldn’t change anything about them for the world. Our biggest problems have been dealing with schools etc.
But in every other way I feel so lucky that my children are exactly the way they are. They’re wonderful and so loving and funny and kind, intelligent and original. I envy you - I wish I could go back to when they were 3 years old and do it all again!
I just wanted to add: try not to worry too much about the future. There’s no way to know how your son will be in 10 or 20 years - just as there isn’t with any child. Enjoy being with your child NOW - every moment is precious. At the time when they’re young we often don’t appreciate that. My eldest did really well at school and was seen as ‘gifted’ - and went to a top university. My youngest struggled hugely at school and had Selective Mutism - which began when he started school. He didn’t do as well academically as his brother but is very intelligent and found other things he was good at and that he enjoys. I won’t lie and say that they haven’t both had many struggles - because they have. A lot of anxiety with various aspects of life. Difficulties with social stuff. My eldest thought he’d never have a girlfriend - and then all of a sudden he met someone at uni and they were living together! And are still together 5 years later - and very happy. You just can’t know how things will turn out. The thing is to enjoy the moment, enjoy being with your son. Don’t look too far ahead - there’s no point because none of us can really predict how life will turn out. Enjoy now. Your child is the greatest gift you’ll ever have. Autism doesn’t change that one bit. I feel I’m the luckiest woman in the world to have had my two, wonderful, fascinating, funny, caring and amazing children. In all honesty I feel a bit sorry for people with very neurotypical sons who are typical ‘lads’ - I would have hated that! I’ve loved having children who were so much more interesting to me than the ‘average’ person. I’ve loved and embraced their uniqueness - it’s been a privilege. Sorry this reply is so long! I just feel so proud of my children - and so incredibly LUCKY to have had them! I understand why people might have mixed feelings about their child being diagnosed with autism - but I really want to reassure you that it will be ok, and it will be wonderful too. Not perfect - but no child is perfect! No human being is perfect. What matters is that you will love them, and they will love you, and you are going to share this amazing journey together. Embrace it!
Hi Kate,
Thank you for taking the time to reply
I know it’s going to be a tough road ahead but it’s amazing to hear from someone who has come out the other side.
I know you’re right about not worrying about the future but it’s hard. it’s all very raw at the moment but it’s a relief in a lot of ways to get the diagnosis.
We are in the process of trying to get him an EHCP as we know he will need additional support at school. We have applied to hold him back a year at school as he’s an august born.
just trying everything possible to remain positive.
thanks again
That sounds really positive. Good luck :)