I've been reluctant to label my possible ASD ds. Daft?

[Ronifromwales]

Hi all
Everytime I go to my Pead he asks about the possibility of a diagnosis, how I would feel about that etc. At the same time professionals are puzzled because he pretend plays, plays appropriately with toys, sleeps and eats well and his fine and gross motor skills are excellent. He's not bothered about change in routine either. He doesn't care if plate or utelsils are different but he has got no self help skills at 4.7 yrs.

He's had DLA and SEN certificate since he started school at 3 yrs and started in full time education this September. He has improved but his vocabulary is very limited still, with a few words he uses at home to get what he wants (not more than ten single words). He will drag us around if he wants us to give him sth and will make an effort to point. He has started calling me from another room (mummy, mummy) which is lovely! He will do echoalia if he sees a fire engine. (e.g. help help fire fire). He is pointing to what he wants too but doesn't share experiences, is non verbal with others and blanks them too. he won't join other kids in activities for neurotypical kids, swimming, gym etc and is a nighmare in church

He is in his local school SRB (special resource base) and is loved by all there. His behaviour is fine, he doesn't have tantrums either. He had glue year for a long period of time until we identified that he is lactose intolerant. He's on a GFCF diet. We've decided to try out ABA after school for a few hours a week and sat ams.

Everyone keeps telling me not to label him just yet. Will this affect any help from charities? we are thinking about ABA financial support and also will it affect any direct payments we might need? I'm just thinking that I've wasted time when I could have pushed for a diagnoses sooner, or not? confused, very confused

I've stopped work now to focus on getting things moving a bit. Full time work hasn't allowed me to focus on things like potty training, helping him eat with utensils, drink appropriately from a cup etc. No problem with my dd who is neurotypical as she just did these things whilst I worked full time and she was in a private nursery. She is a lovely sister to him. There's soooo much to think about...

I dont know about charities or funding for ABA so cant help you there. But I think accepting a dx is a totaly personal choice and there is no right or wrong answer.

I would consider how your child is doing. Are you happy with they way he is coping. It could be the speech factor is preventing him from being interested in children and may improve with time. But only you know your child.

There are a lot of closed doors without a dx. Also understanding from some schools is somewhat limited to say the least.

Who is everyone that is telling you not to 'label' him?

A label is personal and you can choose to use it to gain help but also you dont have to disclose it to anyone if you dont want to.

Caudwell Children fund ABA here

We are in a similar(ish) position. We've been told DS (3.2) has traits of austism, but isn't on the spectrum. I'm not sure what I feel at the moment as this only happened last week, after 11 months of going around in circles discussing his speech and langauge delay, glue ear (grommets, adnoidectomy).

From what I can work out a diagnosis is important in getting certain kinds of help. However, if you can get all the help without a diagnosis then maybe it is better not to label when so young...

The diagnositic criteria for ASD are soon to change meaning children will need to have all three areas of difficulty (social, communicaion and behavioural). You can google DSM-V. With these new criteria I'm not sure we'd ever get a diagnosis as we don't have any behavioural concerns (not rigidity, love of routines, stimming, tantrums - none of them). We do however have expressive and receptive SLD, lack of social recipocity (he only comments or observes, there's very little two way conversation and on the rare occassions there are two very short sentences exchanged they're very much directed by his needs/interests). We also have good eye contact, some pretend play, points at things he's interested in, occassionally takes you to show you things....

It is really confusing. I have met people who had children similar to mine and were diagnosed. Some now want their children reassessed as they don't want the label when most people don't notice anything unusual. Others didn't get a diagnosis early and regret it as they didn't get all the help they needed.

Sorry not to be of much help. I understand the confusion you feel about it all - so I hope that if anything you know you're not alone in this muddled feeling.

You should only see a label as a signpost to receiving more help and in my experience a DX can also help longer term with schools. Who keeps telling you no to label him just yet?. Ask yourself why, what is their rationale behind such a pronouncement.

BTW I was asked that question of the paed re how I would feel about a dx. I replied that it would not change who he was and I just wanted him helped as much as possible (my son also has a statement re school). They all nodded happily!.

agree with coffee and attila. I would think very carefully about the motivation of anyone saying not to label. Family and friends can be well meaning but unrealistic - i.e. thinking that non labelling means that the developmental/language problems are not likely to go away. Schools etc may have a more vested interest - wanting to avoid paperwork, cut down on waiting lists for ed psych etc. A diagnosis probably would make things slightly easier in terms of charities and support groups.

havent' posted very much over the past few months.

There are three reasons that I feel that 'getting a label' is very important.

First and foremost as your dc gets older and what is (or may be) perceived now as not being out of the ordinary or different or problematic can be a very different story as your child progresses through primary and on to secondary education. A dx or label provides an explanation, to family, friends, the child themselves and the power that this has can't be underestimated. Young people who have received dx late in their teens or older have usually spent a considerable amount of time questionning their feelings of being different and natually blame themselves - a label has the potential to help with this.

Secondly, a formal dx, statementing is all important for your dc's schooling; some schools are very good but not all.

Thirdly, certainly as your child progresses into adolescence, (in my experience over here in NI) many of the services that can be accessed require a formal diagnosis; some services require funding, Social Services Referral, etc and they all require a formal diagnosis otherwise they can't be accessed.

I have experience of family members/friends who don't like labels, don't see the benefit - even had words with my sil over getting dd3 assessed recently (sil is a teacher) but none of them have children with special needs.

I guess you have to look into the future. I know my ds is going to spend his life struggling and its getting tougher for him. Its also getting tougher for us. Its fine he is at home under our wing but he wont be forever (or he could be who knows) His peers are miles apart from him and the older he is getting the more difficult it is for him. He gets angry and frustrated and until I have that piece of paper with a dx on it NO ONE is going to understand. They nod their heads (irritatingly so) and pretend they understand. Then the next incident or anxious panic at school and its all gone out of their ears and I get the. SIGH well we can only try cant we.........his behaviour was awful today. They forget, they think two good days means they have won and its all better now. I need to tattoo it on their forheads and have it in writing.

Also he gets angry because he is misunderstood. What if in his teens he smashes a window to get out in a panic. NOW he would be told off THEN he would be fined and locked up and branded a violent teen and due to no dx that is how it will stay.

I got a report "its not appropriate to lable ds with autism" I dont care if it was the queen telling me that I would still stamp my feet and argue. But that is me.

ooh I sound a right stroppy knickers! I am going to put a smiley face now