Published on 12, July, 2020
Im new here but wanted to tell my story to see if anyone else had been in a similar situation to me. I feel like I need a bit of hope
So when my boy turned 2 things started to change. He went from eating everything to full refusal of all hot foods bar Cous Cous and Chicken Nuggets. Still to this day (nearly two years later) he is the same, will not eat cooked foods and has a very limited diet with other foods in general too. He is very sensory based and refuses to wear certain clothing, does not like lots of noise and high pitched sounds and has quirky mannerisms such as feeling and sniffing hair, tapping my legs and making a Di Di or Gii sound. He does not like being touched and does not like cuddles or affection (other than from a very select few people). If someone touches him he can get very aggressive verbally and stressed out. He is very sensitive in one way but in others not so much. For example he could bang his head quite hard and not even notice but if he was to get the smallest graze on his hands or legs he will sob and sob saying how much it hurts. (There is so much more I could put but just doing a few examples)
As he has got older we have noticed that he does not respond very well to everyday life demands and we have found ourselves having to become very specific with the way we talk to him and respond to him. He can be very angry, if I'm being honest he is angry about 70% of the time and he is very impulsive. He goes from 0 to 100 in seconds and his moods are awful, everyday is an emotional roller coaster. We could say something perfectly normal and fine to him and he will snap back and be verbally aggressive with us because we haven't worded it how he likes it to be worded. We did some research and came across PDA. Now this was a big find for us as PDA could literally be written about my son. It is him all over, no denying it.
I have spoken to numerous professionals about my son and they all admit they see something there in him however nobody seems to be helping me take it further. My son has been referred twice to Comm Paeds and both times been discharged due to lack of evidence. The trouble is my son can mask things very well. He is SUPER clever for his age (and in no way am I tooting my own horn) by 9 and a half months he was walking, he could identify animals in a book when asked to find them. By 18 months he could find body parts including brain, heart, eyebrows etc and name all colours, numbers to 10, vehicles and shapes. He even began recognising certain numbers too. Around 2 years old he could recognise over half the alphabet and by 2.5 he could spell his name. His speech is phenomenol and extremely advanced. When he was 2 he was opening Xmas presents, naming the toy as well as what it was made from "oh thats a plastic dinosaur with metal screws". I can't keep up with what he is achieving. What I'm trying to get at is I've been told numerous times that he is not Stereotypical Autistic enough. Because he can give eye contact and attempts to make friends and doesn't hand flap its like noone wants to know. Because he is clever and communicate he's "okay".
Anybody else having my struggles?
Not for autism but the school SENCO told me my son isn't dyslexic as he can read and isn't dyspraxic as he plays sport (badly!). Private assessments say he has both, and actually he is super clever and uses certain skills, particularly visual/spatial to cover the dyslexia - he learnt to sight read not with phonics for example. I know a couple of families who just got their boys diagnosed with ASD at about age 7 despite in both cases all the professionals agreeing that was the right diagnosis for years before. Unfortunately the only way to speed up the process is to pay privately, which for ASD for a child I think you are looking at about £1500 - 2000. Its a big investment but could save a lot of pain in the long run if you can afford it, although he might have to be a bit older - you don't say how old he is now and if he is at school/nursery as one of the key factors is how they respond to different environments. We paid about £1200 for my son's assessments but in the end it worked out really well - he would have had years without support if we hadn't been able to pay. I suspect he has ASD too as there is a strong family history but at the moment he is coping relatively well, if needed I would spend all our savings on an ASD assessment as I know he would never be high enough priority to reach the top of the list for NHS assessment. If they are learning and coping OK - even if not well - then there are always too many others that are higher priority.