ASD - Why would you not want to know?

[GooseRocks]

I work with two pre-schoolers within a school nursery.

ASD is suspected due to, amongst other things:

• no communication
• no eye contact
• no speech
• hand flapping and other typical stimming behaviours (a lot).

A year down the line, while there has been progress in some respects, anti-social type behaviours are increasing (pushing, kicking, attempting to bite) and, if anything, the childrens difficulties are becoming more noticeable. I feel the situation isn't working. I feel that more input is required. I feel that if I was the parent I would be demanding more. I'm viewing the coming school year with increasing trepidation.

The parents have once again refused to have the children assessed. I know they're not mine. I know it's not my choice. But for the love of God I'm struggling to understand.

Anyone that comes into contact with these children would know within a fairly short time that they have difficulties. It's really very obvious.

Please help me understand where these parents are at.

Maybe the parents are in denial, it's a scary thing finding out you child is different.

I feel they're in denial. They don't want "the label".

Thing is the kids already have "the label" as the assumption is that they are ASD without the insight and additional help that a full diagnosis might bring.

It's very difficult to be completely upfront about the kids problems when the parents seem to want to gloss over them. Although they are really very apparent. Tact and sparing the parents feelings is resulting in pre-school down-playing the issues somewhat, imo.

I tell myself sometimes that I just need to stop caring so much about the kids but it's such a difficult position to be in because I feel they're being failed to a degree.

Parents still hoping they'll grow out of it I think. If only.

I wasn't sure about this thread. May have it pulled if it feels inappropriate due to confidentiality but obviously can't speak to people in RL about it.

Sorry, rambling, just wanted to get it off my chest.

Have been told that it may be that the parents never accept the issues and never have them assessed. Their problems are so obvious that I can't see how that can be? Just such a shame that there is more help that could be provided but without the parents onboard it won't be forthcoming.

I wouldn't have the thread pulled,lots of us parents have been there.
To some of us just having a caring teacher made all the difference and if the kids problems are so obvious then the parents will have to pull their heads out ov the sand.
My advice would be to keep on caring and have the tissues ready for when the parents see what you see.

I agree with ineed[and share a nickname with her]

I am in a similar situation to you as in I am currently working with children who need additional support but whos parents are not really engaging in the assessment process.

It is really scary for some parents and sometimes they really honestly do not see the issues that we see in a preschool setting. At home especially with eldest children parents dont have anything to compare with.

At home children can get a lot of one to one, they dont have to share toys or be friends with anyone and sometimes they are not expected to sit at the table or for a story.

I think all you can do in this difficult situation is to try to get the parents to agree to a decent transition into reception. We have got primary staff coming to see the children we have concerns about in our setting and have set up the transition paperwork.

Obviously parents have to agree to this and ours have given written permission for development profile to be shown to primary staff.

I think very carefully and gently is the best way forward when it comes to preschoolers parents. Some jump on board readily and others need lots of support and gently persuasion. It is their very precious child you are talking about after all.

Hope some of that help.

Sorry x posted with both of you then, I took to long to write my post.

I think I am lucky because I can see it from both sides, having a child with SN's myself.

I wish someone at preschool had been brave enough to stick their neck out for Dd3 instead of waiting until she had left before telling me she was the most stubborn child they had ever worked with.

I had told them from the start that she was quirky and I was worried about her but they were the ones who were in denial.

You do have to be careful about confidentiality obviously but you havent really given anything away.

I didn't know, I had nothing to compare him with. I knew he had severe speech and language delay but I thought that was it. I had a lovely SALT who guided me, and once we were told he showed signs of being in the spectrum we just got on with it. It wasn't easy but knew it was best for ds as it would get him help that he needs.

Also I was quite ignorant to asd, I only thought it was lack of eye contact, flapping and spinning and no contact, but ds loved and still loves hugs etc. I know a lot different now and can see its a huge spectrum and ds fits snugly in the middle of it, having bits from all over

with ds i didn't want to know and it took a while for us to actively seek assessment. I think that you should continue to support the children and let the parents come to it in their own time. If the children's difficulties are significant they will eventually have to face them.

i would also say that help for ds didn't suddenly appear when he was diagnosed. help only comes when parents fight for it as we did after waiting patiently and stupidly for those who assessed him as asd actually DID something other than write reports and have meetings...

what input is required OP? Is a diagnosis really essential?

It's easier to fantacise than it is to come out denial and go through the whole grieving process that is a part of realising your child isn't "normal". Grandparents & other adults they know better will also say everything is fine.

The child may not look like the stereotype of the disability being discussed. There's still this perception out there that autism = rainman. This means they may think you are talking nonsense, particulary if their GP/HV tells them there is no need to worry. My GP was certainly in denial mode for years.

Teachers see some parents go through a similar denial process later on when they try and make some parents accept their children just aren't grammer school or Oxbridge material. Parents have a dream of how family life is going to be, and for some dropping the dream in favour of reality is impossible.

Disabiity isn't something everyone is familiar with, so fear of the unknown can play a huge part. There's also the sense that it's something that ony happens to "other people".

A number of men WON'T deal with a disabled child, seeing it as a slur on their manhood, so some Mums may be scared of admitting there's a problem out loud & their marriage imploding as a result, despite privately agreeing with you.

For me it was the opposite scenario to your description, with me wanting answers from rising 3. Five years later and my DS still isn't diagnosed as the wheels of the NHS turn slowly lol! Deffo not this Mum in denial.

Goose, many parents believe the shite about provision and support being based on need and not Dx. They are also often brainwashed by professionals to believe that labels are BAD.

I think in that context heir attitudes are understandable!

because the parents hope if they ignore the problem it will go away
because even some GPs will try and put you off "labelling" - had that from my GP
because family and friends often encourage you not to "label", make you feel getting your child assessed is somehow betraying them.

agree with Boc's analysis, also agree that parents who push for a label find progress very very slow indeed in getting up waiting lists, getting any form of official support. not all nursery staff are as aware or conscientious as you. on one level, DS's private nursery were aware on one level there was some problem with him, but because he was so placid they could mostly ignore it.

I agree with TLP.

Also, what's in it for them?

I'd say very little unless they want to enter a very dark world indeed.

Thanks for responses.

The provision for their kids at present is inadequate. They require 1-2-1 support which would enable structure and routine with flexibility for when they're struggling. At the moment this just isn't possible because the staffing levels aren't there.

Consequently one or other can often miss out on the level of interaction I feel is required as a minimum and, quite honestly, they're faced with chaos rather than routine. They're being treated as a "unit" when their needs are very different. If one is distressed they will be dealt with rather than doing something positive with the other iyswim. Time is spent managing negative behaviour rather than encouraging positive interaction if that makes sense. It's all a bit shit really.

That's why I feel the parents need to get on board and start fighting. I can't do it alone. If they can do that without a diagnosis then that's fine.

Perhaps my expectations are unrealistic also. I want them to make progress. They are, but it is very very slow. Maybe I need to accept that that is just how things are going to be.

It really does help to hear parent pov btw. Thank you.

Goose you sound that you are trying to be very supportive and caring of these two children and that is good and I wish you were in my sons school.

But I will open your eyes a little in saying that from my experience there isnt instant help with or without a dx. Statements are rubbish unless the schools uphold them (which is rare) if they dont its a lot of fight and heartbreak with tribunals and meetings and years on when its virtually too late and you have lost your will to live the child might get a couple years support. So I will say be very careful in what promises of support you make as the LAs and governments and other schools do not necessarily hold up any promises.

The dx process is harrowing and stressful and 9 times out of 10 the route proffessionals take is to blame the parents first before they even consider that the child might actually have issues. First time parents can have it even harder as they can be accused of not having experience in bringing up children so there are parenting classes suggested first. The dx process can take years.

Just letting you know its all a whole new ball game for parents that is all :)

agree with coffee - how good support is depends on many factors other than diagnosis - how willing the LEA and/or school is to put it in (often funding issues, wrongly become the child/parent's problem, rather than the schools), and how far school will take on board the recommendations of the professionals, and then how good the TA is. Just one factor out, and even with diagnosis, a child may have an unhappy experience.

' They're being treated as a "unit" when their needs are very different. If one is distressed they will be dealt with rather than doing something positive with the other iyswim. Time is spent managing negative behaviour rather than encouraging positive interaction if that makes sense. It's all a bit shit really'

What you say makes perfect sense but won't change with a Dx. If the parents are fighters, and I mean REAL fighters to the extent of giving up their jobs, selling their homes, moving, learning the SEN law and prepared to put up with accusations of MBP and child protection issues, then maybe, just maybe, their children will get what they need, but it will be years from now.

But Goose, there are things you can do.

You can involve the area SENCO. You can learn behavioural techniques. You can establish home school link books. You can include visual supports and timetables into the environment to help with transitions (as these are great for ALL kids).

You can learn about all the ways you can help these Chikdren without needing additional resources, because even if the parents were on board you'd have to show that you'd done all this and it had failed before the LA ever became interested enough to put these children on a waiting list, let alone see them.

Doing all of that Starlight.

Well then I wish you had been at my Ds' school in the early days.

Also, if there is anyway on earth you can get on the pyramid PECs course, and buy schramm 'motivation and reinfircement' and introduce the concepts of both into the setting and staffing.........

"If the parents are fighters, and I mean REAL fighters to the extent of giving up their jobs, selling their homes, moving, learning the SEN law and prepared to put up with accusations of MBP and child protection issues, then maybe, just maybe, their children will get what they need, but it will be years from now."

^wot she said^

Add to that the damage all the above can do to siblings, relinquishing their careers and health, & you start to get a picture of what parents who do "accept" there is an issue may go thru to get the right support years from now.

For most an assessment means a round of being patronised by a variety of professionals, sent on pointless "parenting" classes until they are patheticaly grateful for the level of support the children under your care are ALREADY getting. Hands on direct work with the child concerned is like the holy grail - we all hear rumours but noone is quite sure it even exists. The parents may just want to enjoy being parents for a while longer.