Hi all :)
I wrote in here late last year about concerns that my DS (just over 3) might be on the spectrum. We had booked him in for an assessment in early Feb, but I changed my mind and cancelled the appointment. I've since rebooked the assessment for late this month.
Until recently, I had only spoken to a few people about my concerns. Part of the reason I cancelled the last appointment, was because all but two people (DH and a very close friend) thought I was completely overreacting. That he is just shy and needs time to adjust. "That I just need to learn to handle him better"
But now I'm back to feeling that it's not just that. DH (self diagnosed Aspie) is now pushing to get DS assessed too. He feels the constant struggles we have had parenting DS have been a large contributing factor to our separation. We get absolutely no time together, and going out with DS is such a stressful event (mostly for DS and DH), so we don't go out together as a family at all. He also doesn't want DS to grow up feeling as though there is something 'wrong' with him, like DH did. That knowing, and being able to help him learn about why he feels the way he does, would be a great benefit to him.
I feel it would be really helpful to have a better idea about what is causing DS so much stress. It would help me be more understanding. A label could help me in finding new strategies to help DS, when I'm out of ideas (because what everyone else does, doesn't work for DS). And an assesment would stop all the uncertainty I feel all the time.
Anyway! I am going to get the assessment done. But I want to be as informed as I can, and go into this somewhat prepared. So, I thought I could come here and voice the things that concern me, and sway my opinion on what's going on with him, either way.
The stuff that actually is a problem for him/us
Social anxiety. This is the biggest problem for us. He gets extremely stressed when we go out, and there are many people around. He will not play with other children at the playground. Cannot share a peice of playground equipment (he;s on the seesaw, and gets extrememly upset if another child tries to get onto the other side).
He's totally unresponsive if other children or adults talk to him or try to engage him in something. Or he gets very upset (this can vary from turning away and burying his head in my lap, to screaming and crying) Most recently, today while at the park (with a close friend whom we see almost every day, and often multiple times a day) offered him a piece of fruit he was indicating he wanted. He lost it. Hysterical crying and screaming :(
He has done this since he was very young, unable to be held my friends or family members at all. Our friends learned not to look at or smile at him.
But! He has and does choose to engage with people sometimes. He is playing with the trucks/trains pulling trailors, and will say "Look x, trains pulling a trailor"
Since we moved next door to another family, he has on a few occasions now, chosen to engage with the father, talking to him while he fixes something etc. But still wont respond when the father says hello to him in the morning etc.
He's very dependent on me. Spending most of his time, when we're out, on me. He likes to pull me around with him. Often refuses to do anything if I don't stand right by him. This is very hard on me when I also have DS2 (1yr) as well. Who is very social and into everything.
He is very anxious. If he plays in the backyard, and I'm in the kitchen (leading on to the yard), the door cannot be closed (which is difficult when we have a baby who is constantly playing with the door)
Most of the time refuses to go to the toilet without me accompanying him (he doesnt always do this, and is sometimes perfectly happy to go alone without any assistance)
He's been through stages of being terrified of the fireplace (unused), the smoke alarm, the door (waking in the night hysterical and screaming "Door!)
His tantrums/meltdowns and very frequent and, in my opinion, excessive. He has tantrums, when he doesn't get him way, but he also often just 'melts down' seemingly just losing control. Gets hysterical. Crying, screaming. Giving him what he wants never works for this. Any sort of discipline or distraction usually just makes it worse. Usually I have to wait it out. And heavy, rhythmic patting on his back helps a lot. I've also had success a few times reciting scenes from his favourite DVD (Thomas the Tank Engine)
And sleep problems. This isn't a big issue at the moment, because I have gotten used to it. But he cannot sleep with 20-30 mins of heavy rhythmic patting. And needs to spend much of the night sleeping on me.
Then he also has many behaviours, that aren't problematic to us, but are common with kids on the spectrum
He's very repetitive. Using the same phrases over and over. But his language seems to be developing fine otherwise.
He has a lot of 'stimming' behaviour. A lot are vocal. Humming, hissing, singing (babbling), lalalalalala, tickrrtickrtickr. rolling him tongue, moving his tongue up and down (inside his mouth) really quickly. Random yelling/screeching. 'Heavy' blinking. Lying on the floor moving his trains back and forth, over and over. Licking/Mouthing his toys (used to do this to me/furniture).
Never liked cuddling, (although he does now on his own accord) but needing to be constantly held.
He's very tense and rigid, but also 'floppy'. When he gets upset, he just 'flops'. Often rolling his eyes back also.
LOVES water play, but can't stand having drops of water on his clothes. Wouldn't bathe or shower for over a year.
Would not wear shoes for well over a year, but is now able to when the ground is to hot etc (since we started GF diet)
He's obsessed with transportation of all sorts, but loves trailors in particular. Always talking about trailors going on the back.
He does imaginative play, but it solely consists of trains/trailors/cranes (his obsessions)
Always been obsessed with lights and things that spin (washing machines/fans etc)
Apart from a few stages where he was often accidently walking into walls etc, he has very good gross and fine motor skills.
Toewalking (no longer does this)
He used to bang his head/pull his hair during meltdowns.
We had months of refusing to wear anything but long sleeves/pants/hats, even when really hot)
He has obvious sensory issues that have come and gone (freaking out over sounds we can barely hear, hating dirt of his hands, becoming hysterical when he gets an itch)
He only very recently started saying goodbye (still doesn't say hello)
This may sound a little odd, but (alike to his Dad, actually) he often comes across to me as 'robotic'. I find it really hard to explain why I feel this way.
My list could go on, but I don't have time at the moment.
I guess what I'm conflicted about is that he does play with kids, make eye contact, talk to people. But it's only on his terms. And his response when anyone tries to engage with him is so extreme. He's lovely and helpful, but it just looks as though he's just blankly mirroring us.
Does anyone have a child who is similar? Does anyone have thoughts on what we may be looking at?
Will I 'create' problems by focusing on them? Are the things I think are 'issues' not enough to warrant an assessment, and label?
Edited by Eloisa - 3/5/12 at 2:37am