My 2 yr. old has many signs of Autism. She is on a waiting list to get tested. She seemed like a normal only child at first but i noticed that she was a little behind on her milestones. She just now starting saying momma. The first time I noticed a problem was when she was in a daycare and they switched her rooms. She cried all the time and hit herself and scratched at her face. As she gets older the problems seem to get worse. I pulled her from daycare and stay home with her and her little sister. She plays by herself and very rarely wants to be around adults. Her aggression towards herself has gotten to the point were she bruises herself and makes herself bleed. I am very worried that she is gonna get to the point that I will have to take her to the emergency room. I work with her every day and slowly she is getting more words. Could this really be Autism?
Have you noticed anything that triggers the aggression. Usually it's out of stress or anxiety. In the past I have also hurt myself from any of these feelings:
- Extreme sadness (from being picked on, feeling stupid, lonely, being misunderstood, or just down…) Sometimes I’d try to bring up a mental image that would normally trigger a hyper spell, but usually all I could get was a momentary smile, then back to grief…
- Anxiety: feeling the full effects of the fight or flee reflex...Only I can't flee and I can't fight, so against myself it goes...)
- Anger: From being, picked on, something not working out to my plan (frustration), something I created that’s not “perfect” or up to my mental expectation, being punished and not fully understanding why, either that or feeling I was unfairly punished because my parents failed to see my perspective (which by the way I don't remember telling them. I must have assumed they already knew my thoughts without me telling them, because after all I hear my thoughts... That last part is kind of a guess, but I may be on to something...I’m finding with communication, I can find out if I am holding back any important chunks of info from my conversation, and preventing understanding.)
- Boredom... I am stuck in timeout and not knowing what to do with the time in my room...(that may have been anger...)
- Unable to calm down on demand or stop hyper giggling spells... I'd get into times when I thought everything was funny, (sometimes with a mental image being the trigger) Knowing I shouldn't be so “slap happy” I tried to pinch myself to bring my thoughts down to reality and not be so hyper...
- Frustration that I can't make any of these feelings go away instantly at my whim... For some reason I assumed normal people just automatically stopped crying or feeling upset by just a magic thought...
It didn't work for me... I only gave into giving myself extreme negative thoughts which made me feel worse. All this was done quietly without me speaking a word other than maybe screams or sobbing.
As an adult I'm learning better coping mechanisms... For one thing I was putting a lot of unrealistic demands on myself that not even "normal" people can do. Left up to my own mind I want everything perfect...as I plan and "see". Life doesn't allow this. I don’t have the ability to control everything in my life. Over time I'm learning I have to roll along with unpredictability... It’s still a frustration at times…
- If I'm sad, it helps to talk to someone about it. (As a child, I must had felt ashamed? or "I can handle this on my own and if I can't then something is defective with me.")
- Anger: find something else to do...if it is physical punching a bag of socks... talking about what made me angry...(unless the person is making it worse by arguing... then I am best to just walk away and leave them ranting at me.)
- Anxiety: This is the toughie... If I can, I warn the person I am going with I am starting to feel anxious about something, and try to get it resolved before it gets to the point... Give myself enough time before leaving someplace. That way I can find all the things that mysteriously vanished "right in front of my eyes."
- Hyper spells: seems to have calmed down with age. I still get hyper on occasion, but if I am channeling it into my art, I can make others see what is so funny so they can laugh too.
Frustration: If I can, I try to catch myself if I am setting up unrealistic expectations, but this is always uncharted territory. I'm learning something new the more I ask people. The more I ask people, the more I find, that not all of my mannerisms are far from the norm like I perceived it to be... Otherwise sometimes I just have to wait out the storm if it is a bout of depression... After some sleep, I seem to feel better or eventually I can distract myself.
- Boredom: keep myself occupied with several hobbies (not at one time)... That way if I plateau one, I can try another.
These things seem to be helping me. I haven't attacked myself aggressivly for several months now.
I forgot to add confusion is another meltdown trigger: I either can't understand something...or am misinterpreting something. I tend to think people are mad at me when they are not...Then I end up jogging my mind trying to figure out why I made someone mad at me. Unable to find a solution, I start getting angry with myself...
So far I haven't let it cause violent outbursts, but I still struggle with confusion frustrating me, because in my mind I shouldn't be confused. I want to understand everything and if I am not capable than I feel bad or stupid... That's another thing I'm trying to work on... Asking seems to help. Sometimes it doesn't because we have two opposite viewpoints: For instance I wanted to keep a patch of land from being developed near Milwaukee... Ideally in my head I'd like to make just the perfect speech at a ralley that would stop the developers in their tracks... At the end when it all fails...I blame myself for not being able to change the people's minds like I want in my head. For some reason I put a lot of burden on myself and I don't always understand why I do this...
Once again I'm trying to catch myself when those things occur, but it is an ongoing battle... I can consciously understand I am being too hard on myself, but that emotion... continues on no matter how much I try to convince myself...
That's one of the banes of my thought: Intellect over emotion... I want intellect to win ALL times...but emotion is not something that can be controlled so well...
At times of extreme frustration I wish I could just lose the emotions and keep the intellect...
I keep a close watch on her from a distance cause she does not like to be around people. i have yet to see any triggers to her sudden outburst. She tends to do what they call finger and hand flapping with her fingers when she is nervous or scared.
The tantrums can come from changes to routines/expectations/the environment. My son would have a tantrum if I stopped him doing something eg. playing with a toy, because we had to go out/or it was time to eat. He needs to complete things. So if we are watching TV we leave when the programme finishes. Or if he is making a model I would let him complete it before we moved onto the next thing. Now he is getting older we are using a time timer clock to show him 'when' we will be going and as it gets nearer we give him 10, 5, 2 minute warnings. Now he is able to leave something halfway through (not all the time!), but is mainly successful.
I think the hurting themselves can be down to frustration. My son used to hit himself/scratch at his face, bang his head. We ended up overnight in hospital because he banged his head, then vomited and they wanted to keep him in to check he was okay. He also used to vomit if he became upset.
But that was when he was younger. (And even if you take autism out of the picture, they do call it the 'terrible twos' for a reason!) It is alot different/better now. My son has grown and developed and communicates and I have learnt alot and know why he does the things he does. So I think the best course of action is find out what you can about autism and try to get the structure/routine etc to help your daughter. When she hurts herself have you asked her to do something, or is there something about the situation that she cannot do or attempt? For example is she playing on her own and you say something and she hits herself. Or is she attempting to do something with the toy, cannot do it, doesn't ask for help, gets frustrated and hits herself?
Do you suspect she has any sensory differences eg. does she appear deaf, is she touch sensitive or does she appear not to feel pain, does she look at things intently and pick up pieces of fluff off the carpet?
Hand flapping and spinning is very common. My son flaps a bit if very excited, but mainly he is a spinner.
There are a number of reasons put forward for the flapping/spinning. Some suggest it is a way of calming themselves and getting the nervous system back in order. If there are sensory issues finger/hand flapping can be an indication of hypo-sensitive vision (not enough information coming through, so flapping gives more information to the eyes), or hyper-sensitive vision (too much information is coming in through the eyes and therefore hand flapping distracts them to look only at their fingers). Spinning is also linked to the vestibular/proprioceptive senses.
It is very good that she is saying some words. Encourage that, but keep diaglogue simply and slow. Too many words and autistic kids tend to turn off because they cannot process the information quickly enough so it doesn't make any sense to them. It is similar to how you would understand a foreign language. You might understand small 4/5 word sentence, but not long dialogues.
If your daughter is not making eye contact don't look at her when you are talking. I used to 'talk to the wall' when I was saying something to my son. He would hear that. But if I made eye contact and spoke to him he only seemed to be able to 'look', but not 'listen' at the same time.
Anything shes interested in, do it together. If she likes ripping up paper have a go together. If she likes bouncing get a trampette and hold her hands. See how she responds to touch. If she is crawling that is supposed to be good (alot of autistic children don't crawl and they suspect crawling helps with development). If she isn't crawling then you could buy some of those fabric tubes for her to crawl through. After a bath does she like a massage or does it upset her? Try to watch and note her reaction to things and that will give you clues.
You could have a look at the criteria for diagnosing autism under DSM. I don't know how they would go about diagnosing a 2 year old because it is usually from around that age that behaviours become evident and as other children become more verbal and social autistic children don't. That is something you can ask about. Prior to a diagnosis I too could not see 'what' it was that made my son autistic. He seemed like everyone else, just a bit slow with talking and he liked to play by himself. But now, 4 years later, when I read back over the notes I made and how I described my son, it is all apparent. And how my son is now he is obviously on the spectrum because he does have difficulties which have become evident as he grew up.
It is good that they have picked up on her so early, so you should get any interventions started early.
Totally get interventions started if you haven't already. If you live in the U.S., every state has a 0 to 3 program (federally mandated). After age 3, they go through the public school system. Before age 3, you get one on one therapy. I think there are 3 or 4 types of therapies available. Speech, developmental, and occupational I know about. I am not sure if there is another type or not. Occupational therapists can work wonders with kids with sensory problems and kids who like to keep routines and have sameness. Ditto with the developmental therapists. Sensory integration therapy can also help kids calm down a bit and adjust to changes in their environment. I noticed changes with my daughter within a day of her starting some of the techniques... a week later she was really changed... and now 6 months later, she's like a different person as far as sensory related stuff goes. She used to throw tantrums if you moved furniture around in the house. Now she doesn't care so much. We do joint compression exercises, compression exercices like jumping and bouncing, and I do this brush technique with a special brush. We do these things every few hours every single day. They also help kids who have ADHD and other things besides autism, so you don't need a diagnosis of autism to start sensory integration therapy. Occupational therapists (OT) will go over this. You really need to get an OT on your therapy team for your child, if you are able to qualify him.
I agree with Sally44 on the frustration. I wonder if MacAttacks' daughter is like me, has things in her head he'd like perfect but if it fails then its frustration.
I don't remember being much a hand flapper, but I sure was a spinner! If it is a mystery to any parent why their autistic kid spinns, try doing it yourself along with the child. Why do almost all carnival rides spin? It's like the tilt-o-whirl.
It's fun to get dizzy. I haven't stood up and spun in a long time, but sometimes I spin in my computer chair. When I was younger and did spin, I used to do it until I'd get so dizzy, I'd drop on the ground and watch the room spin around me. There was also a time I loved tire swings (which I don't see in playgrounds anymore?) and merry go rounds. There was/may still be a yellow one in the park not far from our house. It was a small one that you kick to spin. I became a wiz at that and got it to spin so fast I couldn't hold on unless I sat down and held really tight. It became kind of a game to see how fast I could get it to spin and how long I can stay on without getting thrown.
I haven't done that in a long time. I guess I've found more interesting things to do with my time nowdays, but it was relaxing when I did it.
I like spinning too, except the last time I went on a tilt-a-world, I got off and barfed. Yup, I'm getting too old... things just started going downhill, like the riding those amusement park rides when I turned 30. LOL. now I know how my mom felt when we made the tilt-a-world spin faster and faster and she wanted off so badly. I spin around with my daughter in the backyard. she loves it. I love it. We get dizzy, giggle our heads off, and fall over on the grass. She doesnt' hand flap as much anymore. She used to whenever she got excited, bored, mad, whatever emotion. Now she just does it when she's angry and upset. She has replaced hand flapping with spinning, bouncing, jumping, and lots of other physical stimulating things. :) And what kid doesn't like to do all those things anyway. So, once your child learns to stimulate herself in other ways, people won't look at her as abnormal.
Oh, OTs help figure out kid's "sensory diets" which means doing things like bouncing, spinning, jumping, joint compressions, being rolled up in blankets, and lots of other physical activities. They teach you how to get your kid to do those things socially with you instead of off on their own. And yes, you can get an OT before a diagnosis. If you live in the US, if your child has issues that are sensory or adaptive (self-feeding and dressing and that sort of thing or having behavioral issues from sensory related things), you qualify for an OT. OTs also help out with kids who are behind in the motor skills area. My daughter was ahead in those areas actually, but she was behind in the adaptive and behavioral area. Each state qualifies differently, but you can talk to the people who do the testing or if you're already in the program, talk to your service coordinator. You have to fight for your rights sometimes. Most of the time, actually. As someone else told me, you gotta get used to it, fighting for your kids and your family.
In the UK you may get access to an OT through 'Health' depending on the diagnosis of your child. Children with autism do not get referred automatically, and even if you request to be referred because of sensory issues, the waiting list is around 2 years. Only some special schools or private schools have OTs. Apparently the Education Authority does not consider OTs 'essential to learning' and therefore don't emply any!! But as anyone with a child with an ASD (which usually includes sensory stuff) knows they simply cannot access education without the input of an OT. Of course you can pay for an OT privately, but not everyone can stretch to that. Sounds like you system is better than mine!
She got the appointment we have been waiting months for. TEIS (Tennessee Early Intervention System) is coming out on May 7th to evaluate her. If she is 25% deficient in two or more areas of development or 40% deficient in one area then she will qualify to go to The Harwood Center where she will get tested for autism and other disabilities. So that is good news.
Sally44, Waiting list 2 years in the UK for an OT? That's crazy! If you have to pay for an OT out of pocket, you could ask them to show you two techniques and have them do it in one session. Joint compression and brush therapy. Those two things have done wonders for my daughter. The OT could show you them in one session, and other things to do to do sensory stimulation, like bouncing on balls, jumping, swinging, rolling up in blankets and then you could do those things on your own. I wonder if there is some sort of free/inexpensive conference thing you could go to where they would go over those things.
MacAttacksMom, It's good you are getting the eval ... May 7? You had to wait months? After I got referred to our state's early intervention system, they had a timeline to meet. It ended up taking about 6 weeks for services to start. I had to wait a week after getting referred to have the initial visit to fill out forms, the evaluation was a copule weeks after that, a week after the eval to meet with everyone to go over the evaluation, pick the therapists out, and then a couple weeks to get the paperwork signed off by the pediatrician and back to our state's program. In the end it was 6 weeks. I know waiting can be frustrating, but just be patient, knowing that it will happen. Also, make a list of all the things your daughter does, so you have something written down for the appointment. I was told to do that by my daughter's pediatrician, and I'm glad I did, because I was so nervous, I was forgetting things and stuff.
Its unbelievable the difference in provision isn't it! It took me 18 months to get a diagnosis, then the 2 years waiting for OT on top of that. That is why I have ended up researching/reading/seminars etc myself because I was sure my son would be 16 and leave the education system before anything of any value took place. But I find it very useful reading everyones comments and get lots of advice from that too.
We got the results back from her TEIS development assesment. She is 40% deficient in communication, 40% deficient in adaptive, and 25% deficient in social/emotional skills. She qualifies and will be set up with a speech therapist, have a behavioral evaluation done, and start school in the fall.
That is great.
Three pieces of advice I would give you now is:-
First, start saving all letters/reports etc. Always put concerns in writing to professionals involved with your daughter and ask for written replies.
Secondly, get in touch with a parent support group because they will have lots of advice and information and usually get together for social time for the kids and adults.
Thirdly, get in touch with an advocate service or whatever is available in your area that can give you independent legal advice that specialises in special needs educational law and find out what you and your daughter's rights are. Because no-one in the system will tell you what you are entitled to. They are all trying to keep within their budget and if you don't know your rights you may get fobbed off by things like 'we don't have the staff', 'the Ed Psychologist is on maternity leave', 'we don't do that in this state' etc etc. If you know what the law is you will definately get better provision that will be specified (who does it) and quantified (how often).
One final thing I forgot to mention. As she has some sensory stuff eg. flapping. I would recommend you google the name Olga Bogdashina and read an article by her printed in Autism Today. She also has published books. Sensory and Perceptual Differences in Autism and Aspergers has a questionnaire at the back that can be completed by parents and it gives you a sensory profile of your child. Our city uses that questionnaire to profile its autistic children. This is a very important part of how autism effects them and every autistic adult including Temple Grandin have said that they believe everyone with an autistic spectrum disorder has sensory processing and perceptual difficulties varying from mild at one end to severe disjointed/fragmented information at the other. You will find this book invaluable in understanding her behaviours and also her learning styles.
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