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 :)
As far as I know professionals prefer to diagnose children early these days - even before the age of 2. The earlier the better. Apparently the earlier they are diagnosed, the better the 'treatment' (as far as possible obviously).
I'd look into getting a professional diagnosis.
Hi, be positive and trust your daughter’s potential. She is special and she will definitely get better. Please bring her to occupational therapist! Good luck!
UPDATE!!
For anyone who is intrested, we had an appointment today with speach and language. The health visiter sent a referral because my daughter gags and chokes on lumpy food, she cant eat solid food. She refuses to eat solid food. She eats the 7 months jars of baby food as it is soft and smooth. At this appointment we had to bring soft food and lumpy food as they needed to see what she would do. She asked loads of questions and we told her our conserns. She refused to eat the lumpy food. My 21 month old cant even feed herself. She can only say a few words and spins anything she can. The women got us to break a tiny bit (smaller than a pea) of baby crisps thingy that melts in your mouth. My partner puts it in her mouth with my daughter putting up a fight as she didnt want anything to do with the crisp. My daughter swallows the tiny piece of crisps and starts to choke, then she boked. Our concerns is that its sensory, she only likes the smooth food with no lumps. Anyways the lady is referring us to child developement and then she will most likely get statemented but cant until she is 3.
I dont know how im feeling now, I will always love my daughter but I noticed the signs at around 6 months and nows shes getting older it seems to be getting worse, more signs keep appearing, she is now started to lick everything. I just want her to have a normal life.
Hi,
Please don’t wait, go to GP and get a referral to paeditrician. My daughter started seeing the paeditriciam when she was 26 months and get diagnosed at 33 months. You need to on top on calling to get appointments and get her to he in the system as soon as possible. Early intervention works best when they are young. My daughter also very sensory and put things in her mouth all the time, her favorite is play dough.
Good luck!
I’m actually really glad I just saw this post as it reminded me of my own 22 month old daughter. It’s understandable with the family history of autism that you are concerned. She is showing some traits but do you mind me asking if she has any developmental delays? Maybe keep a diary of any behaviours she displays to show your health visitor when you next see her.
My own daughter is not yet walking or talking. rolling, sitting and crawling we’re all delayed but she mastered them eventually, she doesn’t use gestures at all, she rarely responds to her name, her eye contact which used to be good is going ‘off’ now, she likes to be cuddled on her terms but doesn’t like it if others initiate cuddling, she’s also not very tolerant of being touched, except she does like her feet being tickled or massaged and a back scratch is sometimes accepted depending on her mood. She also has always been drawn to lights since birth, she loves spinning things, office type chairs are her favourite and she will literally sit for hours spinning them. I’ve had to get her toys that light up etc as she is more inclined to play with them. She’s a sensory seeker too and shakes her head for long periods of time (to make herself dizzy), does frequent head inversions (to get the blood rush to the head effect) she also pulls her hair sadly, though it’s more of a sensory thing as she seems to like the feeling of raking her fingers through her hair. She’s not always aware of pain either, I barely know when she’s teething and she rarely makes a fuss if she falls and bangs herself on something.
Luckily she’s already under the paediatrician, physiotherapist and occupational therapist due to the delay in rolling/sitting/crawling/walking. The health visitor has also referred her to SALT (speech and language therapy) for under 3’s. She is my 3rd child and this is NOT normal. I myself am recently diagnosed ASD (Aspergers) and I’m pretty sure that my eldest daughter and most of my mums side of the family have ASD (Aspergers). I’ve raised my concerns that she is autistic with the physio and OT but they just dismiss it saying she doesn’t have the autistic facial dymorphology (she does have some facial dysmorphology) She has a review with the paediatrician at the end of February (6 months late!!) so I fully intend to insist that she is referred for assessment for ASD, never underestimate an Aspie on a mission :-) They can diagnose under 3 by the way although it’s not as common. It’s so frustrating having to play the waiting game though!
Hi. As the others have said some of your daughters traits could be autistic but again lots of normal children also do these things. How is she doing development wise in other areas, such as language and understanding, social, eye contact etc? My son has just been diagnosed at 3, even though I knew it at about 14 months. I'm happy to talk about anything if you need it x
You are right, in that there are quite alot of traits showing, might be worth another discussion with the health visitor but I think they will still insist on waiting for the two year review but at least they would be well aware of you concerns prior to this
Hi, thanks for the response... I forgot to mention when she watches cartoons all of a sudden she would squeel in fear and run with her hands over her ears. My parter works with autisic kids/adults and she can see traits of autism. It was her who suggested telling health visitor. Its just the repetive stuff she keeps doing every day. I have also never seen a child so fascinated with lights, she likes the camera light from our mobile phones but im scared she might damage her eyes as she puts her eyes right up to lights. My partner took her to the park the other day and when cars drove by she would cover her ears because of the sound.
Some of the behaviours you describe certainly fit with autism but 20 months is still young, and as such your daughter may grow out of them. You were right to raise it with your health visitor, I know it seems ages to wait for her 2 year check but most places will not consider referral until this age.
I understand how difficult it is especially with your first child, start keeping logs of her behaviours so you can see any patterns to it as well as any sensory issues like the light fascination. This helps when you go for her check up as it is there in black and white for the health visitor. If you are worried before then you could try the gp but they will probably give the same advice as the health visitor
Trust your instincts and stick to your guns no-one knows your child like you do remember you are not alone and there is loads of information on this site that you may find helpful