Published on 12, July, 2020
My daughter is fascinated with lights, when we turn the lights on at night she walks about staring at them. If we go anywhere that has lights she keeps looking at them and doesn't pay attention where she is walking. We got her toys that has flashing lights and changes colour, she puts her face right on the lights and stares at them. We have also noticed that she is repetitive with her play time. She would turn her toys upside down and keeps spinning the wheels and stuff that spins. She also goes to all the cupboards and open and shuts them constantly. She has started to flap her arms sometimes and sometimes walks on her tip toes. I feel at times she just ignores me when I speak to her, most of the time she doesn't listen to me.
I'm just a bit worried as autism runs in both our families. On my side I have 4 nephews that have ADHD and one nephew is severely autistic. I myself have borderline personality disorder. On my partners side she has 2 brothers with ADHD and a sister with autism. We told the health visitor about our concerns and she just brushed it of and said that is expected behaviour in kids that age, this is our first child but do all kids act like this? She said it is to early to be diagnosed with autism, I think she said 3 years and upwards? she did say if my child is still showing symptoms at her 2 year assessment she will act on it.
So am I being over the top? Is my child acting normal?
Cheers
Hi all,
Sorry for the long update. My daughter turned three not long ago and I have been searching for info and this place came up. I forgot about this thread until today. Over the last year a few things have happened, my daughter got a genetic test done and the results came back that she has (duplication on chromosone 12 (12q21.2) Now before all this lockdown happened even before christmas, they did more test to see how this duplication will affect her and we are still waiting on results to this day and I understand that there will be delays because of the virus. Another thing showed up at the same test and my daughter has deletion on chromosone 15 (q11-2) and this deletion is linked with autism, adhd and developement delay.
My partner and myself had to get genitic test done too and we are waiting on results. There is adhd and autism on both sides of our family, I have 5 nephews who have adhd and one nephew with severe autism. On my partners side she has two brothers with adhd and a sister that is autistic. I even think I have some form of autism myself. When I was young I had eating problems, I would also only eat burnt chips or burnt toast and other problems like ocd with not eating of anyone elses plate. I had to have my own plate and knives and fork and if ayone used them I would go crazy and not touch them again. To this day I still have to have my own plate and knives and fork. My behavior as a child was bad and I found it really difficult to make eye contact with anyone and even now I find it extremely hard to make eye contact with anyone, its like there is a huge invisble brick wall stopping me from making eye contact. As a child back then then it was just put down that I was a disobient child, nobody pick up on it.
My daughter has had her proposed statement and they have to get her a specialised unit for nursery as she wouldnt cope with mainstream nursery, she has to be in a small group as there is no way she would cope with 25-30 kids in one room. Also has to be a specialised unit so that my daughters needs have to be met and no mainstream can cope with her needs. We got a letter stating that the education authority are searching for a specialised unit and we should hear from them soon. On the proposed statement they said everything is looking as autisim but she is too young to say for sure. My daughter is 3 now and I thought thats when they can tell?
My daughter is still on a pureed diet, still wont eat solid food as she cant cope with the textures in her mouth, she cant say sentences and her speach is still jargon. She can say lots of one words and has a photographic memory, its actualy scary how she can remeber places that she has only visited once. She is obsessed with the alphabet, she can say the alphabet from a-z but might miss one or two letters out. If she sees writing anywhere she will start to call out each letter and then start to sing abcd. She is also obsessed with my phone, When I get up the first thing she will say "daddy phone" and if I refuse to give her it she will have a meltdown. She knows how to navagate my phone, how to get to music and facebook and I even hid the google playstore because she keeps downloading games and she found where i hid the icon. The biggest worry beside her eating is her behavior is getting real bad. One minute she will be fine and out of the blue she starts to bite, nip and scrab us and wont stop. We cant take her anywhere as she will want to go her way and goes nuts if we dont let her. She has no sense of danger whatsoever, no self help skills at all like cant feed herself. Its a massive struggle for her to transition from anything,her speech is repetitve.
Anyways sorry for going on but thought I would give an update. I dont know what all this genitic stuff means but on the doctors report it said when me and my partner and my daughter test results come back they recommend gentic counciling. I dont even know what that means? All I know is my daughter has a rare genetic disorder, I dont know what to expect in the future nobody has told us anything, I search google and theres not much on her disorder like a forum like here. Thanks for reading :)