This patient support community is for discussions relating to the challenges of parenting children (age 6-12), including physical development, handling school & classes, emotional development, cognitive development, and games and activities.
ever since my daughter was 1, i knew she was different. everything has to be perfect, she must feel in control, shes heat sensitive, clothes sensitive, she self inflicts scratches on herself when mad and she doesn't like to be held when hurt ever. it makes very angry. the only times she was held was to be nursed and than she preferred to be down. she will hug more these days but just because shes starting to realize that shes different. shes very stiff and uncomfy. if u throw away anything broken, she feels out of control and wigs like i've never seen. she has way too many fears for her age and she must know everything and if i don't have answers than its like she can't handle. shes much better in school, around work. if shes at home and we give her schoolwork, she mentally sponges everything.so my question is, does this sound at all like autism. the older shes getting, the less accurate testing will be. i've been trying to get anyone to listen but knowone will.
I'm not sure what is going on, but it doesn't sound like autism. My son has a nervous system delay called sensory integration disorder. It can look like different things in different kids. Being extremely sensative to touch (clothes bothering you, NOT wanting to be touched or hug) is an example. The opposite end is a kid who craves big bear hugs and will get it even if he has to plough into you. Inability to deal with frustration and all the frustrations that come due to maybe some mild motor issues are part of sensory as well as regulation/ modulation of the nervous system (little things FEEL big and the meltdown lasts a LONG time). A coping mechanism for sensory is to always be in control of your enviroment and wanting things just so. With that being said, the fact that she does well at school and this is primarily at home misses the mark. Usually a child has a harder time where they are slightly out of their element or they have the issues everywhere. So, I'm not sure what is going on. Is the school more routined and she does better with this. Could you incorporate that into home life? Are you punishing her too much (for example, getting angry when she won't hug? ps--- try not to. She probably can't help that.) Every child has a different temperment and perhaps your daughters is just more difficult. That doesn't mean she is delayed. How is her social interaction with peers? Does she have friends or activities?
Anyway, if you think it is something like sensory or another delay (doubtful it is autism, as that would involve marked problem with social skills and not just not wanting to be hugged, little eye contact among other things.)---- you would need to be referred to a developmental specialist. In the US school system, kids are evaluated when a problem arises in school. Since your daughter does well in school----- I think you'd have to go outside to get an eval. Then you would go from there. Sensory requires lots of muscle work, physical activity, brushing, and skill building. Medication won't work. Let me know if you would like more info on this. Good luck---- being parent is HARD work!!
thanks for the reply. school is alot more scheduled and that is why she does so well. if something should be out of place at school too, like for some reason they couldn't go to art she would melt, but at home i do try to keep a schedule for all the kids because they all behave better. i have alot of health problems and was in and out of the hospital for 14 month and so the scheduling got very messed up but as soon as i felt good enough i put them right back on.i do not get mad about her not hugging me. when she was smaller it did break my heart that i couldn't help her when she was hurt. if i try to go to her if she falls off her bike, she'll start growling like a bear and start hitting me so i just quit trying and than other parents don't understand why i don't run to her right away, cause thats usually a normal reaction if our children are hurting. for her first two years in school she excelled fine, but because she was sooooooo nervous being around people, she'd walk the halls with a distorted look with her mouth. it would be open widely and her toungue off to one side. she also would do that in the mall, the grocery store or anywhere shes not comftorable with. she also throws up when she gets nervous. everytrime we try camping or go on vacation she pukes and blames it on eating too much. these are things shes quite excited to do, until we are there. its not normal to her. her things aren't with and for sure theres no schedule. i know she could just be a difficult child but i do have 4 kids and i've never seen nothing like it. when she first started school, i was getting phonecalls from other moms, telling me she beat the snot out of their kids on the bus. i guess i just don't know and i feel quite helpless in all this.
She could have a form of autism and if she doesnt fit neatly into Aspergers or Autism there is also PDD-NOS which is the label given when they have autisitic tendencies but they dotn have all the symptoms required for Autism or Aspergers Syndrome. She could have Sensory Processing Disorder by itself also. My son has high functioning Autism as well as Sensory issues (which often go hand in hand). I see quite a few red flags for soemthing, whether it be sensory issues or an ASD. I would get her evaluated asap. Good luck!
could u please tell me about your experience and what of my daughters issues could be a red flag.
i have sought help for 5 years and shes never been tested because everyone chalks it up to a difficult child. i have 4 kids and yes kids are hard but shes nothing like her siblings. i hate to even say this about my own daughter, but she has no empathy and she, i believe could seriously harm a sibling and not care. this scares me alot!
Hi, You said something that rang a bell for me. For example---- she gets very excited to do something but once there she is either not excited anymore or upset. My son with sensory integration/ processing disorder does this. He can't wait for something but then his nervous system gets out of wack and he gets upset or has a hard time enjoying himself. This is the regulation/modulation piece of sensory. Also, eating so much until you throw up is sensory like in that she isn't getting the signal that she is full. Kind of like she has a high tolerance for pain, again, not getting the signal. Sensory symptoms come out when a child is overexcited, overwhelmed, or out of their element. Even a loud place like a mall can make it very hard on a child with nervous system problems. Perhaps she has a pervasive delay or something going on with her nervous system. I encourage you to find someone to evaluate her. If you have insurance, call them about an occupational therapist evaluating her or a developmental pediatrician. Perhaps she is just difficult (many kids are) but your mother instincts tell you its more. Good luck.
Well pretty much everything you have listed can be a red flag for either autism or sensory integration. You have described alot that are direct red flags or things that usually go hand in hand (anxiety, ocd etc): that she is rigid, need for sameness/structure and routine, sensitive to touch, self injury, phobias, anxiety, seeming lack of empathy, overstimulation, social anxiety & frequent meltdowns. But, in order to get diagnosed with an ASD (autism spectrum disorder) you need to have at least the certain amount of impairments.
The things that I had noticed when my son was small around 2 is that he was lining things up instead of playing with his toys and that he was obsessed with the moving Finding Nemo and would watch it over and over again and would tantrum if denied. Hed also rock his head from side to side. I didnt think too much of them tho i did notice it but it wasnt until his sensory issues started getting in the way that I started asking the doctors about it. My son was sensitive to touch, sound and occasionally light. Hed refuse to wear clothes or a pull up (didnt fully potty train till 5)) and would poop on the ground so he was a little nudist, hed freak out over loud noises, cover his ear all the time, hide and be afraid, resist being hugged or touched by anyone except me and then only on his terms, he was a picky eater and only ate frozen waffles and milk and gagged on slimy or lumpy foods to name some things. I brought my concerns about these things along with my concern that he may have had a seizure up to his pedi I was dismissed saying he will mature with age and if he worsens he may need some behavioral modifications but wait and see hel grow out of it and as for the seizure theyd like me to wait till he has another one. I switched pedis and the new one said the same exact thing to me. So i took him to a neurologist myself and my son was first diagnosed a week after his 4th bday. I brought up the behavior concerns I had which I thought were sensory integration disorder related (i had been reading all about it and was convinced thats what he had).
We left the office with a diagnosis of PDD-NOS (pervasive developmental disorder-not otherwise specified). We asked the Neurologist what exactly is that and he said Autism. We were both floored needless to say. I have 2 cousins with autism and they were severe so I was comparing him to them and Autism never would have crossed my mind, yet i didnt know much of anything about it tho. Because I didnt believe the doctor and wanted a second opinion we took him to a developmental pediatrician (who is exactly the type of doctor you should take your little girl to for an evaluation) and he dxed our son with Aspergers Syndrome. A little while later we took him to go see a neurologist who dxed our son with Autism (high functioning), so hes basically been dxed all over the spectrum but reguardless of exactly where he falls he must be somewhere on there and we are finally accepting of it.
He come so far from at one point being antisocial, screetching, in his own little bubble with his obsessions, almost being kicked out of preschool because of his behaviors to now in the first grade and thriving at a new school and practically indistinguishable from his peers. Hes had alot, almost all of the symptoms except he was never speech delay (tho he did have a period where he lost his speech but regained it at 1 1/2 yrs old). Hes been in therapy and esp OT has helped him TREMENDOUSLY with the sensory issues! He has some issues but nowhere as bad as when we first started this journey, alot have faded or become very mild. Esp once we got all the stress of school under control his home life improved alot! Anxiety and stress play alot into making thier symptoms flare up even more.
He is on an IEP and gets resource room for reading, writing and math (he has SLD as well) and occupational therapy (OT) pull outs, the special needs bus picks and drops him off which has helped with his bothersome transitional issues which is why he needed the FBA, he has a picture schedule and a social story and basically is doing great! So if your daughter is having trouble in school you also need to address that too because thats where she spends majority of her day so id suggest you request them evaluate her in writing send a letter certified mail to them and tell them to consider the letter your written consent to evaluate your daughter (that way that starts them on a 60 day timeline to get her evaluations finished). However I had to fight like hell just get my son an IEP at his old school it is very draining but order the book From emotions to Advocacy is a great book and will equip you with what you need to know in order to help your daughter get what she is entitled to under the law. But also def. get her evaluated privately too if you would like but you can request the school to evaluate her first (you dont need a dx).
Here is a link to the DSMV for an ASD diagnosis: http://education.qld.gov.au/students/disabilities/adjustment/verification/asd.html
Here is a link to a screening that automatically scores your child and gives you a readout: http://www.childbrain.com/pddassess.html
It is not diagnostic but i would have you and your husband do one seperately and someone else who knows your child well and print them out and take them to a doctor and insist on testing.
Also IF she has problems in school you can ask the school to evaluate her but from what i got most of her problems are outside of school. You mentioned you get phone calls from parents who kids she beat up. If this was during school hours you need to request a functional behavioral asessment done on her. This will evaluate her behavior and find out why she is doing this (her triggers, the need it is meeting etc.) and they can put a plan in place to help her deal better. My son has one for morning transitional issues. She does not have to have any diagnosis or an IEP for you to request any type of testing done for her.
I hope i havnt given you too much at one time and overwhelmed you but you seem to want answers so whatever I felt could help you i shared but there is so much more so read up and research and arm yourself with information. Good luck and if the doctors wont listen to you then MAKE them listen dont stop till you find one who does because you know your child better then anyone does, even if she does not have autism, you need answers so keep trudging thru.(((hugs)))
I forgot, if you do order the book From emotions to advocacy written by peter and pamela wright you can also look at the Wrights website: http://wrightslaw.com/
Its a great site and good to use until or if you cannot get the book, but i recommend the book too.
Good luck in the good fight, after all if we wont fight for our children then who will?
thank u both so much. besides my husband i have never had anyone ever think these are red flags just a difficult kid. knowone listens and not that i want something to be wrong with her, it feels good to have people validate some of my concerns. it does make me feel like fighting longer. i had given up for awhile.
she is already enrolled in iep for speech and every meeting we have and i try talking to them, they laugh at me about her other issues, saying shes a delightful child and no that could never be the case. i have to dress her the night before school or she will miss the bus everyday. it takes her that long to find something acceptable to wear and even doing it at night still takes us near 2 hours. i have 2 other kids in school and they would not dream of dressing the night before. i have to buy her special socks and all stretch or sweat pants for school as she cannot wear jeans. this has been a very difficult journey with her and i just appreciate all your responses. it means so much to me.
like tonight shes got the stomach flu. she wants nothing to do with me and thats ok but sad. my 2 other kids just had it too and they wanted me sitting with them and rubbing their backs and touching their hair. not her. i just keep my distance until she asks for help. her newest behavior is disciplining my other 3 kids in the house. its gotton bad. if someone pulls her hair she rips handfuls of their hair, if the baby bites, abby bites back to bleed and when i talk to her about this she just says that she does it better than me. how sad is that. my daughter telling me that i don't punish good enough so she must do it. i'm at my wits end.
well thanks again. it just feels so good to talk about.
Everyone kept telling me that nothing was wrong with my son too and even other mothers or family would shrug things off but yet when my son would do something strange or overreact they would all make faces or get quiet so it was a very uncomfortable feeling. I think alot of people want to assure you or not make you feel worse by agreeing but they dont realize that by doing this they are already making you feel worse because you already KNOW something it not right and comments like "He must be tired" or "Someone missed thier nap" make you feel invalidated.
After school my son would immediately start melting down sometimes before we even get into the car or home, he would turn into a terror and nothing I did or he did was right, hed get aggressive and cry and it was just miserable at home after school. This lasted in intensity for a couple of hours then he calmed down more later. I knew it was school related even tho I was getting such good reports from the teacher. They didnt take my concerns seriously about getting him evaluated for an IEP if needed until i wrote a certified letter to them. As time went on and they did the evaluations I found out that his teacher was modifying his school work herself (which is illegal!)and even forgoing his schoolwork to work on his social skills. So basically his grades were wrong because it wasnt being measured and held up to the same standards other kids were because she had modified his work (or basically held him at a lower bar) and things she said he did well, he DID well but was copying her.
Basically, I got the same exact thing with my sons school, they downplayed my concerns and treated me like I was crazy saying he was fine in class and doesnt need an IEP. His reg. kindergarten teacher even got hostile with me and was ignoring me at one point, i think she thought i was attacking her for not being a good teacher, which was FAR from the case! It had nothing to do with her (tho i wasnt really happy with her at the time) the only person this had to do with was my son and i think alot of people forget that and take things personally or go on the defensive but thats why i send certified letters to communicate with the school because if it wasnt on paper then it wasnt said (i learned that the hard way) and also I reiterate that I want the best for my son and always end my letters with thanking them for working with me in the best interest of my son.
I think its clear she needs OT. You can send your written request asking that they specifically evaluate her and give her a full comprehensive OT and sensory evaluation. You might also want to request the same time that she be tested for Autism (my son got the GARS-2 but there are diff ones diff schools use). Im assuming she is classified only under speech and when she no longer needs speech she will also lose her IEP so if you can get her classified under Autism or Other health impairment or even emotional disability she will be able to keep her IEP. If she gets qualified she will get OT at no charge (same as the speech therapy). IF you do get her evaluated id strongly recommend you go over the results of the evals, i found multiple mistakes that were geared to downplaying my sons disability and weakness. Ask for the score sheets for everything and go over it with a fine tooth comb. Also make sure they do a OT asessment/evaluation NOT screening, there is a difference.
Maybe at home she needs a picture schedule? Its easy to make your self you can search pictures online (or if she knows how to read it can be a typed visual schedule) and print them out and laminate them. and put together one easily and quickly that way the structure in school can be followed at home too. Could be she is disiplining the other kids because she feels out of control herself. My son is VERY bossy. He is very rule oriented as well and will scold other kids tho he wont usually get aggressive with them. Picture schedules help tremendously when they are feeling lost and anxious because they feel scattered and they dont like that feeling. Her stress levels may just go down and things may calm down more. Its worth a try.
My son is excited to go places often and soemtimes when we get there or are driving there he gets panick attacks or anxiety and starts saying he wants to go back to his town or back home. Part can be the transition and part can be them being bombarded with all this new sensory input they are not used to.
Developing a visual schedule when you go on vacation can be hard because sometimes you do things on a whim or dont know exactly what you are doing but you might be able to pull something off. Or at least inher daily visual schedule you can add vacation into it and hype her up and talk alot about what you all will be doing ahead of time so she is mentally prepared for the change.
There is a book called The Out-Of-Sync Child by Carol Stock Kranowitz and that was the first book i read when we were dealing with my sons sensory issues before any dx's and it was eye opening to say the least. I highly recommend it, it just might help you understand you daughter alot more. Carol Kranowitz also has anther book called The Out-Of-Sync Child has Fun and it has a bunch of exerises you can do with your daughter at home or till she can get into treatment. Your lives will improve tremendously and most importantly HERS will! She wont seem so on edge all the time. I cannot stress how much my son was helped with OT and a certain treatment called the wilbarger protocol and joint compressions he got in OT.
My son is 6 and I still dress him often because he doesnt dress the night before and he needs so much prompting and reminders often i just dress him myself! I did make him a picture schedule for dressing in the mornings that shows each step he has to do but we are not very consistent with it i must admit.
Id also like to share that I have a 5 yr old sister (we are years apart!) and she has a severe speech delay (at a 19 month old level) tho shes improving but she also has some issues my mother in law took her to see my sons nuerologist for. She says clothes tickle her and only wear 3 different types of shirts and skorts (same style and brand) and they are all worn with holes but she refuses to wear anything else. She is very inflexible and its her way or the highway. Her issues are mainly with clothes tho and of course speech and the neuro said she shows signs of OCD but its too early to dx her with it. I dont know if she does have OCD or not but it seems more sensory related, it is strange and hard to figure out. But her behavior does not get aggressive towards other and interfer with her life and others (considering shes allowed to wear those certain clothing anyway) but if it did and was more widespread then she would be in treatment for it right now.
My son never fought me when he was hurt thankfully, but when he was younger he didnt like to be touched in general and if others (besides me) would touch him hed freak similar to your daughter, even his dad could not touch him, it hurt my husband ALOT. With treatment he is SO much better, he allows people to hug him and especially lets his dad hug him tho he still has his limits.
Hang in there and keep trying till you find answers because I guarantee that you will if you dont give up. I have taken breaks to revamp or I have taken breaks because I was discouraged alitle and nothings wrong with that. Just make sure you get back up and fight thats what counts. Good luck!
my fight really begins now. i started a war with my 7 year old this week because we are seeking professional help. i just can't take it anymore. her behaviors are getting worse. her fears are overtaking our lives. 3 nights a week she hyperventilates at 2am because she knows theres people in our house. she so scared she can't even come to me. i have to go to her. i'm so so tired. thanks everyone for your advice. her doc app. it tomorrow at 3 and she sees the school counsler as well. shes acting devestated from this but i hope this is the right move.
Hi! I hope you are well. I have really benefitted from this exchange, and am wondering where you are now with your daughter- what diagnosis (if any) you received, what therapies you have found useful, school decisions, etc. My son is likely HFA, but until now (almost 7) it hasn't interfered enough academically or socially to qualify for help at school. At some point he's exhibited many autistic traits, even though most have been transient. What persists is his speech/language delay and his social challenges. I'd love to know how your family is faring now. Thank you.
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