You're right at the beginning of the journey and its a very scary place to be. You will go through many emotional feelings and sometimes it feels a bit like a merry-go-round ie. you have a good couple of days then something happens and wham you're back on the floor again. When I got a diagnosis I felt as if a policeman had turned up at my door and told me my son was dead. I grieved for the life I thought he would have for a long time. But in reality my son had never changed, only my perception of him had had to change. Other people are relieved to get a diagnosis. Your reaction is normal to you.
You talk about OCD, but you mention it in regard to changing a routine. Children/adults with autism need structure and routine without it the experience is different and scary to them. I also understand how your son appeared 'over emotional'. My son would cry like his heart was breaking and I might just have turned off the TV because it was time to eat. I now understand that he finds it very difficult to leave things unfinished (I try to let him see the programme to the end), and I use a visual timer to show him if we have to leave in the middle of a programme.
I would say at this point try to look after yourself. It is very important that you are feeling okay both for yourself and your child. Try to keep routines your child is expecting so that change doesn't make him anxious/stressed etc. The professionals are getting involved now and it will become easier and you will begin to see why your child is doing the things he is. It will begin to make sense.
Try to be a bit of a detective. Watch what your son is doing and try to find out, read books etc, as to what may be causing him to do that. For example my son used to scream when I tried to brush his hair, teeth, cut nails, put on socks and shoes etc. He reacted like I was really hurting him. Then I found out he has got alot of sensory differences and all the things I was doing were hurting him. So his reaction had been a normal reaction to pain eventhough it was an abnormal reaction to touch from my point of view. Now things are alot better.
I wouldn't start on medication yet. I have managed to do without it. I know some children/adults do have it, but I think you need to see if there is anything else you can modify before you go down the medication route. I actually use my sons emotional overreaction to indicate to me that something is happening due to autism, so I examine what has just happened closer to get to the root of the problem.
If he is not speaking they will suggest using visual pictures to communicate. It will all get better. Your child will learn and develop. My son is 7 and in mainstream school (although I may move him), but he is coping and he does enjoy himself.
Oh, I forgot to say ... if your son is interested in numbers and letters that is a really useful obsession to have! Try to use his interests to communicate/play with him rather than removing the numbers/letters and giving him a toy you think he should be playing with. If he likes numbers you can introduce Thomas the Tank Engine (alot of autistic children like that). My son still watches alot of TV. He also repeats the dialogue from commercials/TV/DVDs. So for the moment I would say just go with the flow.
Being obsessed with numbers and letters is good. My daughter started getting obsessed with letters at 24 months and was able to do letter recognition after a week of watching an ABC video and playing with an alphabet toy that had a quiz feature on it to find particular letters. At 30 months, she is learning the sounds that letters make, though she has some pronounciation problems. She can recite her alphabet song and I think she is teaching herself how to read. She already recognizes certain words like baby and plane. She also knows how to count to 10 and the significance of numbers. We do a lot of flash cards to help her vocabulary grow. The flash cards have the words printed on them as well as the photos. But, seriously, it's not like I'm forcing her to do all this stuff, she wants to do all this. Why not take advantage of the obsession since it helps their educational growth?
I really think that our kids if they are so obsessed with things like numbers and letters, that it is a great thing to bring out in them. If they are behind in things like speech and being social, being ahead of the game in things like reading and math is probably a really good thing. Having a great memory is also a good thing for school. Man, just encourage all those things, especially if it makes them happy.
Oh, there is a really cool magnet toy that Target has. It's called Magnet School or something like that. You match the letter of the magnet to the alphabet card it goes to. There's also a bunch of refrigerator alphabet stuff and Leap Frog has some sort of electronic fridge alphabet toy. Then there are the alphabet toys you can start practicing making words with. I got a bunch of alphabet toys even though my daughter is only 2 because she'll grow into them by the time she's 3 ... I find the method of "try before you buy" helpful... ways to do that is go to a child consignment shop or just let your kid play with the toys in a regular store, though I think the people at Toys R Us are getting tired of us sometimes. We only go once a month or so, but they follow you around pretending to stock shelves giving you the evil eye glare that says "your child better not create a mess that i have to clean up". The store clerks at Target dont' seem to care about parents taking their kids there to play with the toys. I think that's what moms did during the winter where I live... can't go outside to play, let's go play at Target.
My son shane was diagnosed about 1 1/2 years ago with pdd nos,he will be 5 in june. I will agree with you on the memory and to obsessive compulsive issues. I took Shane to a my softball practice yesterday and when we were getting ready to go he asked my if he was going to break his finger again this time (when I took him to a practice over a year ago he wanted to hit the ball cause thats what we were doing,when he swung the ball hit his finger giving him a black nail)when I questioned him about what he was talking about he explained to me that he was talking about when the ball hit his finger.
I had totally forgotten about it,but it was as clear as day to him..As far as his obsessions he has several, he loves skateboarding and skateboards,everyone he meets he asks if they know how to skateboard,if they have a skateboard, Shane is a very accomplished skateboarder for his age so I think this might be a good obsession,since they say that a pdd nos child may have a hard time grasping the team sport concept which breaks my heart because I played them all, he does show alot of interest in baseball and hits and catches the ball extremely well..So with this we will have to wait till he reaches the age where he is eligible to partake in those kinds of sports..as far as tantrums he has his moments,ever since he was an infant my wife has made sure that our children have a consistent/structured routine.But if there is ever a change in his routine he takes it fine as long as we let him know in advance there is going to be a change, if he is watching a movie and it is supper time he will ask us us to pause the movie, if he is playing outside we tell him he has 5 more minutes and will reiterate it
every minute or so, usually when we tell him to start picking up and putting away his stuff and that gives hime an idicator that it is time to come in..if he doesnt then we have start picking the things up for him in which he will generally join in..As far as your childs obsessions let him run with it, as far as the changes in routine try letting him know in advance..As far as Meds, we have not crossed that bridge my wife has mentioned it to me when he has extreme tantrums,but in talking to some other parents who have gone the meds route.the majority of them stopped it after a couple of months due to to much of a change in their child,instead of being happy go lucky they became very lethargic and withdrawn..My son is such a happy kid that I dont think that I could bear to see that happen to him..
Yes, I agree with the memory of past events thing. I have found that my son is quite open to doing new things or going to new places. But whatever happens on that first occasion is like a template for what he will expect the next time. So if we went to a certain park on a sunny day and he took his bike and we all had a picnic together, he will be expecting the same things to happen on the second trip to that same park (unless I talk it through with him beforehand). If I don't talk it through, we will arrive there and he will ask for his bike, and I will say "I didn't bring your bike because I didn't know you wanted it with you." And he will throw a tantrum and we will end up getting back in the car and going back home. Sound familiar???
But I am fortunate because he is verbal and at least now I know what is going on and I can plan round it. But think of those parents who haven't cottoned on to this type of memory and expectation of a repetition and whose children are not verbal. They just get the tantrums/behaviour 'out of the blue'. Or, as in your son's case, the memory of the baseball was a bad one and he was expecting a repetition of that experience. How many times do our children outright refuse to do stuff because something unpleasant happend to them the first time, and we don't even know sometimes because they don't always talk to us when things go wrong for them.
I think it is crucial to try to find out how autism particularly affects your child and how they tick because then you can put the strategies into place that work.
I too would avoid meds if at all possible. Occasionally, if he has not slept properly for a number of nights I will try a sedative, but I don't particularly think they work well and the next day he is not functioning properly, so I try to avoid it.
And I think the behaviour (as inconvenient and disruptive as it can be) can also be a very good indication of where their difficulties are and therefore you can home in on that aspect and try to see what is causing the behaviour. I usually find something is the cause of it with my son.
I agree with frequent reminders counting down the time. My son has no concept of time so I can't expect him to do things within timeframes if he has no understanding of time, so I have to count him down eg. 10 minutes to go, 5, 4,3,2,1 etc. I am thinking of bringing in a traffic light system eg. card with green, amber and finally red for stop. My son used to find transitions very difficult and also found it near impossible to leave something half finished. He had to complete everything before he moved on otherwise he obsessed about it and it really stressed him out. Now he is 7 and he is finding it easier to stop things or pause things.
I sometimes find his fear of something rather than his ability stops him attempting some things. Eg. he had a three wheeled scooter (two wheels at the front and one at the back) for a long time and I was trying to move him onto a two wheeled scooter. But he threw tantrums and he was terrified of falling and of not being able to balance. It took alot of persuasion and encouraging and social stories about practicing to get better. Finally I hid the old scooter and made him scoot on the new one. We had tears and rage and he was telling me what a bad mummy I was etc. We were late for school every single day (because he always scoots to school). But after two weeks he is scooting on his two wheeled scooter and he is very proud of himself. I am hoping to get him riding a bike by age 9.
My point is that if you think your child is capable of something it is worth pushing them to achieve it, but you must be near certain they are 'capable' of achieving it otherwise it will be a very bad memory for them to have about attempting new things.
My son also struggles with team games. I think he finds the concept difficult to undersand. Also the possiblity of any one on one contact scares him. I also think that if they have difficulties with theory of mind it is very difficult for them to anticipate what their opponent might do (with marking someone for example). But he loves things like trampoline club, climbing club etc.
Even though Shane had the bad memory of the last time he hit a softball the first thing he wanted to do was hit them,I brought some of his plastic ones with me and he refused to hit them,he wanted to hit the hard balls,and he did this with no fear at all,he was in the outfield with me during practice and he was running after the balls hit our way,one came pretty hard and took a bad bounce,hit him in the chin,he cried for a minute then continued to go after them without fear, when he skateboards he goes down ramps and
over jumps showing very little fear,the only ones he shows fear on is the 1/2 pipe vertical ramps which is about a 5 foot drop (at and angle), he wont do these because they are to high, I think that for things that are within reason he has no fear, things he can control, he will jump off of the top of his swingset where the monkey bars are (its about 7 feet)
but the landing is something he can control..so he does display common sense..As far as the concept of time when he was put in time outs we would tell him that he was getting 4 minutes, (we would usually do 1 minute for how old he is), towards the end of the 4 minutes we would see him starting to get ready to come out of time out,like he knew it was coming soon..I think this established his recognition of time..as far as being outside say we were playing ball and he was hitting,I would say ok Shane you get 5 more swings and he would say something like no I want 4 more (thinking 4 was more than 5),but when he realized that we hit 4 without hitting 5 he soon caught on and would say no I meant 5 more..If it werent for the tantrums and his voice mannerisms (sing songy voice and repeats what was said under his breath in a red rum (reference to the tone of little boys voice in the movie The Shining) voice.. I would honestly think that he has been misdiagnosed with pdd nos and actually has ADHD and OCD..
I think getting a diagnosis can be a relief on one hand, but many times there is a bit of a 'pick and mix' thing going on with different traits from different conditions but not enough of any one condition to get a definate diagnosis. I can envisage a time in the future when my son could lose his current diagnosis because he improves so much in one area. Infact this does happen alot with children and adults.
Those are pretty good suggestions I see.
- letting your autistic kid know in advance of any change
- time warnings (when they get older having them keep a digital watch may be a good idea)
- trying new things, yes I believe you are right.
Whenever I start something totally new I feel clueless like I've been plunked down in a foreign place with different a different language and customs. Either that or plunked down in an airport and expected to dirrect air traffic. Any mistake could lead to death of several people... At least I feel like that. I'm very unforgiving of myself and mistake making... It's part of my perfectionist nature. If something is flawed then it totally upsets my expectations and then I feel like a failue.
Fear of making mistakes be common with autism. For one thing when I plan something, I tend to leave no room for error.
If I have a previous (successful) memory it helps make things go smoother. But to get the previous memory, it takes a first time and that first time, I like to do with someone... especially going new places until I can remember the experiance in my head and feel confident enough to do it on my own.
About the fear of failure... It seems like not only do I tend to expect myself to be perfect, but I sometimes maybe even more often than I realize, expect other people to be just as perfect...or at least falsely believe that they are perfect.
Here's a recent example:
This last Sunday there was a really beautiful song that I really enjoyed. I thought if I could just focus on the tune (completly even forgetting the conductor was playing the piano which I love) that I could "burn" it in my head and make a perminant memory of the song to play back in my head at my request...
*sigh* As soon as the ending song came after, I completely forgot the song and am still REALLY mad at myself for not being able to burn the song in my memory. I was thinking had another maybe less mature autistic ran intot he same issue I did, they would likely thrown a fit as soon as the next song started, because it would ruin their ability to play the song they liked longer in their head.
Being curious and wanting to learn more, I asked a few people if they could remember the song other than "that was a good song" and a slightly happy feeling to have listened.
It turned out the Neuro-typicals (non autistic people) I asked couldn't do it either! In other words what I was expecting out of myself was unrealistic. Maybe a savant can do it, but for the rest of the world, hearing a song once doesn't grant that ability to replay it mentally in perfect detail.