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Just took toddler DS to clinical psychologist for prelim assessment for ASD. Feel awful.

(6 Posts)

Hi

I have suspected DS (2.1) might be smewhere on ASD spectrum for a while. MCHAT with GP at 2 year check flagged up some issues. Mainly social. Eye contact, not interested in other children at all, in his own world, not responding to name, not pointing much. Speech,gait, balance, appropriate play with toys etc all fine.

In the last 6 weeks he has made huge strides with eye contact, (with us),is much happier and language has exploded although often repetitive and uses scripts but how much of tis is normal with toddlers just learning to all I don't know.

The main concerns are social interaction and not wanting to look at or play with unfamiliar adults and any other child, familiar or not. I mean parallel play, not collaborative, he's too little for collaborative play.

The problem I am crying about is I just do not know how he can be properly assessed by a stranger when he hated going to the psychologist office, wouldn't play with her toys and just wanted to go home.

All I do all day every day is look after him and make sure he does not get distressed. I do take him to singing and dance sessions, a painting session and birthday parties when noted but I am not sure what he gets out of them. I do a regular play date at a friend's house but he won't play with her DS (same age), just with his toys.

I can't see how he will cope with nursery in September and how he will manage when I'm not there advocating for him, entertaining him and making him comfortable and creating an environment he is happy and free in.

I keep trying to push his boundaries a little but he really does not like playgroup or grou ps of other children or doing anything out of his routine so rather than force him and have him get head bangingly distressed it is easier just to leave or not go. As a result I am socially isolated and exhausted but I can't see how I can ever have the sort of life that other toddler parents have where they can hand over their child to someone else for a while, or have a grown up conversation or have lunch with a friend because of the effect on DS.

Am dreading the assessment process because I can't see DS being his normal self with an assessor and trying to video him playing with toys whilst a stranger observe or tries to interact is just going to end up in his screaming in distress and trying to escape and get to me.

I want to hide in our little bubble where we are safe and life works for us but I can't not get help if he needs it. And I have no life at all apart from attending to him while he is awake and then getting him to sleep and then recovering.

Anyone got any experiences to share? Sorry this is long.

Sorry for typos, am in hurry while he naps

cansu Mon 04-Feb-13 19:35:59

Think of the assessment process as a hurdle to get over. I hated the whole process as I think it highlights everything that isn't right and I like you had adapted and made everything as easy as possible. I also think you become accustomed to how your dc react. Dd is of course lovely and cuddly and sociable to me but alongside other NT dc and in strange environments she appears very autistic. I find that very hard to see and so protect myself by sticking to people and places I am comfy with and where she won't stand out. There is nothing wrong with this approach but you have to grit your teeth for the assessment as it is a necessary hurdle for you and your ds. That said don't be afraid to speak your mind. If he is finding something awful I would say so. Say "he is struggling do you think you've seen enough yet" I went through it with ds and just went home sobbing. With dd I was clear that I wasn't up for a long drawn out process. I made this clear to pead and she was fine with it.

Thank you that is just how I feel, that's so helpful.
I hate seeing my sons distress and it is distressing for me too.
Today at first meeting I asked how long it would take from outset as DS obviously not happy from the off. She wouldn't say and that made my stress levels rise as I knew he wouldn't be able to cope while we had a long adlt conversation...He was very good, but stayed in his chair asking to go home over and over while psych talked and asked me q.

He wasn't interested in her toys and after 1.5 hours (!!) was banging head with distress. Normally I would have left after 20 mins, as I always do when he has had enough...he was so good to put up with it.

When the psych said I would have to leave him in a room with her or sit there next time but not interact I wanted to cry. Also feel constantly judged as PFB or neurotic mother when attending to DS in session instead of answering her questions - I wasn't expecting the process to be so distressing for us both and so frustrating as I know how jolly,chatty, relaxed and playful he is at home.

Thanks so much again.

FightingForSurvival Mon 04-Feb-13 20:30:09

Hi I am nearly at the end of the process, I have unofficially got the dx, but have to go through the formal consultation. I have hated I too, really hated it. But my DS is five and with hindsight I think maybe he could have been diagnosed earlier. I really wish he had been. If you get the dx earlier you will avoid the pain of having an undiagnosed child in nursery or school. Hang in there. Grit your teeth. Find something else to take your mind off it too.

AgnesDiPesto Mon 04-Feb-13 21:46:46

Trucks it might be too soon for you to consider this but you may want to have a look at schools with asd or speech units or special schools with nurseries. Often children can go to specialist placements from 2.5. The classes are much smaller and the staff more experienced. We went and looked when ds was 2.3 and although it was hard to confront we could see benefits to him going there if only for a year or two until his language improved and he was interacting more.

Even though ds was suitable to go and lots of prof agreed with us he would benefit the LA refused to pay so he ended up in mainstream anyway (until we paid for private ABA). If you even think there is a possibility a specialist placement or unit might be more suitable then think about applying for a Statutory assessment now. They will say its premature (we were told this) but the truth is LAs often turn down applications for very young children anyway and most parents have to appeal so you may as well get the process underway. You don't need the diagnosis to get a statutory assessment and if you have to appeal you will have the evidence by the time you need it.

Even a part time placement would give you a break. You may feel more confident at a nursery with more expertise.

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