Published on 12, July, 2020
Hi everyone
im hoping joining here, I will be able to talk to other parents who are going through the same thing. I feel very alone as friends & most family members do not seem to see what I see or are going through. I am constantly made to feel I am a drama queen & he is not any different to other children.
Im not sure where to start really but I noticed when my son was 16 months old that something wasnt quite right as he hardly ever looked at me or anyone else. I remember typing in 'why wont my baby look at me' & then started reading into things & other symptoms of autism came up & I slowly realised he had alot of other 'signs' too. It was hard to judge though as he was still a baby & other people were just saying hes too young to worry about anything like that & as he is my only child, I didnt know what I was talking about to be frank.
At 18 months old, we took him to the hospital as he had tonsilitis (we thought it was more serious than that at the time) and 3 doctors began asking questions relating to autism. It was at that point I knew straightaway my previous concerns were confirmed & it broke my heart. They advised me to see our family Doctor.
We did this & we were referred to an Autism Consultant & since then we are now going through the diagnosis process with different assessments being done all the time.
Although we havent had the formal diagnosis yet,we know our son has autism and I thought I had accepted this & come to terms with it all. But just this week we were completing the DLA form with our sons keyworker & it broke my heart all over again realising how different our little boy is to other children his age etc.
As he is getting older it is becoming more noticeable 'to the world' & us & im finding it really hard & would love to talk to others who understand the struggle.
His sleep is just getting worse (he can survive on 3 hours a night sometimes) & he has never slept through the night!
His eye contact has improved slightly with his dad & I, but he will not look at strangers or family members that enter the room. He will not react to his name being called. He has severe speech delay & only says 'mumumum' or 'dadada' but not in context. He likes to jump up & down repetively & mostly done on the sofa! He will not feed himself & throws the spoon or plate if put infront of him. He will only use a specific teated bottle for all drinks. The ONLY food he will pick up is crisps.
He seems to be fine with change (we have moved 3 times inc different counties) & its like hes been oblivious to any home changes. & he also likes mess, so not the usual there with typical autism traits.
Sorry if I have gone on here but I wanted to give our story & see if anyone else has gone through similar & how do you deal with things?
thanks for reading
Firstly, welcome to the forum. There is a wide variety of people on the forum. Some more affected than others, some are parents but many, like me, have been diagnosed later in life after significant difficulties with social life that can only be explained with a diagnosis of autism.
As a sufferer, I have read a lot about it and also suffer from some of the issues (e.g. sleep, eye contact) that your son has.
The first piece of advice is to find about about positive reinforcement. People with autism often react badly to anything that appears to be arbitrary and unjustified. Try and encourage good behaviour but above all try to be consistent so that he has the best chance of working out what the rules of life are. Try not to change your mind and give in if you have said no - it is better to delay a decision and get it right than make a snap decision that you then overturn.
Sleep patterns in a child with autism are often an issue. There are good practices for sleep hygiene that apply particularly to asomeone with autism. I use blackout curtains sometimes and this can help me get through what would otherwise be a sleepless night. Try and reinforce the natural daily cycle - days should be bright but nights should be dark (perhaps darker than you might think necessary. There is also a current trend to try and avoid exposure to blue light in the evenings - turn off the tv and ipad and phione - blue light looks like daylight and it can fool the brain into thinking that it is still daytime. There was a BBC programme about this last week (it was about kids generally but it also applies to kids with autism) that you should watch if you haven't already seen it.