Would you have liked someone to tell you earlier?

[lisad123]

I often wonder how things would have been different if the Nursery nurse had been a little more forceful in her opinion, other than saying to me, "DD1 tends to play alone, doing the same task over and over and is very focused".

However, I am currently running a parenting course for children in the local enrishment group, which provides services mainly for children with SAL delay. One of the parents tells me alot about her child wanting to always be alone, an obbession with trains and cars, lining things up ect.
I know i cant say anything, but wonder if a few hints might be worth consdiering.
We were very lucky with dd2, who got help from 2 years old, and its made a huge impact on her.

Yes, I wish someone had said something earlier although tbh depending on how it was said I may have been offended.

I shared a lift with the friend of one of the mums whose dc are in my ds class (if that makes sense) she has a child on the more severe end of the spectrum and she said your M has Autsim doesn't he? This was about a year before we realised that the behaviours he was exhibiting were autism related.

Once we realised I was a bit [ that other parents had recognised it before we had.

You mean professionally you're not allowed to say anything?

I think you should tell her enough so that she can make the connections herself....

Yes I wish I had known earlier. Expect I would have been pretty hostile to the bearer of bad news though...

I never understand this. There should be training and an official 'line'.

The non-ASD community paediatrician said to us 'have you considered autism?' and then said 'why don't you look at the NAS site and see if it rings any bells?".

Well I ignored it all for 4 weeks, then read a couple of books and then KNEW.

Saying 'have you considered ASD?' is not the same thing as giving a dx or even suggesting one. The person will probably just look at you blankly or confused, but there has been no beating around the bush and they can get on with doing as they wish with your comment/question.

I wish someone had mentioned Autism instead of pussyfooting around with speech and language delay. Even though the delay was only 3months it caused so much turmoil in our lives, not sure we would ever recover from that.

We went private to get a dx and afterwards i met the first paed and argued with her as to why she didn't mention ASD in the first appointment so we could put things in place for him such as ABA. Her response was " I don't know what your personal circumstances are whether you could afford any therapy or not, hence I did not mention it" surely their job is to give the patients options and let them decide whether they can afford it or not. I suspect they don't mention it because they are told not to, as it saves the state money. Misguided I know but when had the bureaucrats ever been known for their wisdom. Screwed us up big time though.

TBH, I don't think I'd have believed anyone who wasn't a professional way back then. Deeply in denial, he just had speech delay, just like DS1 (actually nothing like DS1. ) I would have been a bit and maybe a bit insulted. How stupid was I?

That sounds as if I'd say nothing, but actually, just because I wasn't ready to hear it, doesn't mean I shouldn't have been told.

DS was diagnosed at 11, at an early age the paediatrician asked me if I thought he was autistic.
I said I didn't know and she said she didn't either as he was too young to tell. It would have been preferable to have known earlier.
With hindsight, it was obvious from about 2.5.

As a "professional" I'm not allowed to tell them. I have another little boy that attends the group at the centre and he clearly has autism. A staff member asked me for advice on preschool ect and I said the only one I could recommend was the local private autism and communication unit BUT again I'm not allowed to say that either
I might said the "have you considered Asd" line.
They can't fire me atleast as I'm there freelance

Am in a similar situation Lisad, I working with a LO atm and I would love to be able to say do you know anything about autism, but I can't and it's horrible.

When Dd3 was a preschooler she always played alone or with an adult, they didn't know anything about ASD but I do and can't say anything.

Lisad, why are you not allowed to say anything?

I think I was very in denial for a long time.

When I did mention stuff to hcp's (HV and paed) I was dismissed completely (actually laughed at by HV)

The nursery teacher mentioned a couple of things when he was 3.5 - I duly asked HV and paed - all kids tip toe walk, all kids have sleep issues, all kids find it hard at nursery.......ad nauseum.

Amazing really, where are "all these" fictious children?

If I had a £ for everytime someone has said "he'll catch up", "summer baby", "boys are lazy"....btw...where did that gem come from???? Are ALL boys lazy???

Am trying v hard not to panic atm...ds1 (3) has started tip toe walking

Because its unprofessional and we aren't specialist so not able to dx and parents may think we are making dx or hold it against us if we turned out to wrong.
I did once say to a parent on the salt group with me "you know your sons autistic right"

Lisad, sorry I missed it- are you a SALT?

No I'm an outreach worker, but spent last 11 years working with families and kids.

I really wish someone had noticed with DD! She's now 13 and still undergoing assessments. Saw HV/GP/consultant with night terrors, food obsessions, tiredness after a full nights sleep, tip toe walking, bladder and bowel control problems, reflux and refusals to walk. No one connected the dots and I knew nothing of ASD. When I finally read about Aspergers it was as if someone had wrote about her life!!

I think the problem with professionals NOT mentioning it, is that parents can keep their heads in the sand thinking 'well, that professional works with ASD children and hasn't said anything so my ds can't have that problem' etc etc.

Agree with starlight, no one mentioned asd to me although it was obvious. Only the geneticist mentioned it, without her I would have never have thought of it. I didn't know what it was. Thank god she did, it started us on our way in terms of helping him.

I think if parent is talking to you about issues as problems then saying it might be worth looking at definitions of ASD, is just conversation as far as I can see... I know the time I spent being fobbed off when I knew something was different with ds was so frustrating...

I think part of the problem is the bloody miserable social model of disability that we have here.

Kind of if the parents haven't noticed then let them have their happiness for a bit longer as when they find out it will be traumatic for them and there is nothing that can be done anyway.

My dd1 was only diagnosed with ASD 2 weeks ago, she's nearly 9. Nursery raised concerns about her social skills and communication and we went for tests for hearing and she had occupational therapy, she's also been under the SALT since she was 4. But not once has anyone, even paediatricians said have you considered Autism at all. We discussed between ourselves but always came up with if she did then someone professional would have said and we're just being silly. Now thinking we should have been stronger in our convictions and pushed for a diagnosis. It wasn't until she in year 3 that her then teacher asked us we'd considered it, and then referred her for tests.

I'm actually a little angry that it's taken this long to be picked up on. But I think I'm more angry with myself for not following through on what I thought. I feel like I've failed her. If she had been diagnosed earlier she would have had more help, especially in school, and wouldn't be as behind as she is. Reading, writing and maths levels of a 6 year old.

So yes I wish she had been diagnosed earlier.

This is really interesting to read, because there are a lot of parents out there who get very angry when possible issues are mentioned to them by Early Years SENCos, and then the many more who just go into denial. I think people who work with young children are often caught between a rock and a hard place.

Yes, but anger or not I think the rock is the right place to be.

I mean if the reaction is going to be uncertain, you should move in the best interests of the child surely? And the best interests of the child is almost always an opportunity for early intervention, regardless of the parents reactions.