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.

The SN thing is new to me so I'm being naive and overly hopeful by the looks of things.

Bochead I see what you're saying.

I want everything done now. Not a "wait and see" type of person so have been struggling to understand that re parents. I guess if things are as desperately slow as you're telling me then it's not going to make a great deal of difference anyway. For the sake of my own sanity I need to chill out a bit too.

How are the children at home? We've had both of our children assessed as having ASD, one with ADHD as a comorbid, but until they started primary school we had no idea since they were chatty, bright, affectionate, slightly high maintenance kids at home.

When they went to school though, they started having problems and it was very hard to believe for us that they were so different until we started seeing it with our own eyes! They barely talked at school (in fact in the report on my youngest he was described as having selective mutism) and behaved completely inappropriately with their peers.

It might be worth letting the parents view how they interact with the other children/adults in case that might tip the balance.

Ah no Goose Tbh, as miserable as we all are here it's a brighter world for us to be shown there are people like you out there!

Simple understanding & kindness to our kids are what we cherish most - you have that in abundance Goose. FFS don't change!

SALT sees them in school and at home and they can "perform" better for her at home but..
Very very little communication at home as far as I am aware.

No acknowledgement of each other.

Never say hello or goodbye to parents when they arrive or leave nursery (or to anyone else).

Don't wave.
Don't point.
Don't seek help if they eg want something that they can't reach etc..
Very much in their own little world.
Do make eye contact at times.
Do smile at times.

Have speech but don't use it to communicate (eg I will hear them naming things but they aren't telling me as such).

The parents have accepted that there is delayed speech / communication problem but don't want to look beyond that and are hoping that being around other children (and time) will see them right.

Unfortunately it's not going to be enough.

I think I'm feeling the pressure because there is an expectation that we'll have them sorted out and ready for school and that just isn't going to be the case.

Thank you for your kind words btw. I do appreciate it.

I think I've built up a pretty good relationship with them on the whole. They will come over to me sometimes and lean in to me, which I like to think means they want cuddles. Frowned upon of course but i don't care. Makes my day worthwhile!

Of course the flipside is that I'm the one they take their frustrations out on as well.

Some days are appallingly bad. Can be very distressed at times for no reason that I can fathom. Very hard to manage. Tbh sometimes I leave work feeling I can't do it anymore. Was reduced to tears last week. Was alone with them at the time and did get a funny look from one (empathy - good).

Other days I get lots of lovely smiles and eye contact and I love my job again.

I've become very attached to them and I would feel terribly guilty walking away from them but it is really really hard at times (obviously 100x harder for parents).

Goose, for all the love in the world, there are some DC's you just cant sort out before they move on.

All you can do is start the process, do a good transition and then hand them on.

There have been many children I have become attached to and some I have become too attached to, it goes with the job.

What is your early years advisor like , we are really lucky at my setting ours is lovely, seriously overworked but really good at her job and especially with helping parents to understand what is happening and why we are asking for intervention.

We also have really good links with the children's centre and the school we mainly feed into.

It sounds like you could do with some more support.

Good luck and I hope your good days outweigh your bad ones

Bunting you speak sense.

Early Years Advisor is crap tbh. All talk and no action.

I do need more (practical) support however I think if that isn't forthcoming then I'm just going to have to accept that I'm one person and I can only do so much. Stressing about what I can't do isn't going to help.

I assumed from the early posts you did not have outside professionals involved - but you do - a specialist teacher and SALT.
So really you need to put pressure on these people. Its their job to persuade the parents. They are supposed to be trained to deal with parents in denial. They have a duty of care.
Can a nursery or a professional refer for statutory assessment? I thought they could. Look at SENCOP or ask the Area Senco.
You would have to tell the parents but i don't think you need their permission, an EP needs to see these children and advise whether they need to go to special school.
Also nurseries can generally apply for extra funding - but i guess its too late in the term for that
I would agree in most cases LAs act very badly and don't put in the support - but the thing about most posters on here is they are well educated and the sort of parents LAs think if we push them hard enough they will go private / home educate.
The very few cases my LA has treated properly have been parents in denial and with little support network on the basis that even the SEN officer who treated my son so terribly must have found it within her to realise that doing the same thing to these other children really would be unforgivable. These children got into SS with little difficulty I think mainly because it was realised the kids didn't have a hope otherwise.
I strongly suspect that they fight middle class educated parents more because ultimately they know the kids will be ok, even if the parents have to sell their home to make sure of it.
These children might actually get through the statutory assessment process fairly easily especially if their ASC is as severe as you suggest.
Can you get an EP involved with or without statutory assessment?

Goose, the more of this you record, the bigger the chance that it can be used when the parents finally wise up. Pictures, daily diary, communication and social skills levels with detailed examples, the foundation stage competencies etc. This will be very useful later.

Also document exactly what extra you're doing, what works and what goes less well. A copy of everything goes to school, but make an extra copy for the parents, and perhaps one to keep in the filing cabinet at work. Anything sent to the health visitor will one day end up in the NHS school nurse files. Cos school may 'lose' the early years records, and then offer much, much less than you do in early years, the kids will go backwards in reception. And when the parents notice and complain they'll be told they were imagining the progress (slow though it was) because they're still in denial.

Wise words from Maria!

goose I so wish you worked at ds2' pre-school! they are doing everything in their power for ds2 NOT to get an ASD diagnosis. Right from the start when I mentioned I was worried about him and that ds1 has AS, they pretty much laughed at me and said that he does nit have ASD. They have had ONE child with AS before and ds2 is NOTHING like that child. oh really?!? DS1 and DS2 couldnt be more different if you tried, but I am still absolutely certain that ds2 has HFA. They have even gone as far as completing a questionnaire, basically lying on it. Why would they do that? what would be their benefit from it? I mean, ds2 would be getting full-time 1-2-1 support!

Can the SALT, the specialist teacher or you get an ed or clinical psych in to observe? As said upthread it's the professional's job really to point the parents in the direction of assessments that are needed. And although many back away from that responsibility. And many imo do a bad job of pointing parents in the direction of the services that are needed.

They sound very in denial, but if the children aren't even pointing (are they imitating at all?) then they're going to have to get over that at some stage.

There are a few children in ds1's SLD/PMLD school who have no diagnosis because the parents have never wanted one. Well no official one - just 'severe learning disabilities' I guess. How much of an affect it has depends on what is available locally really. Here there's an early intervention programme (which is pretty good actually) that doesn't require a diagnosis so it would be possible for the children you describe to be referred onto it (although the parents have to play ball a bit and agree to be involved as well for the service to be offered). Or how about portage? Again that can be provided without a diagnosis - and if the parents accept speech and language difficulties as a dx it could be started from that point.

Do you have an early years forum? It may be that intervention programmes exist that you don't even know about (that was a real issue for the intervention programme here - children being referred far too late).

Well, because to you, these children are two very oddly behaved children against the background of all the other normal children, where you make a comparison in their behaviour.

To the parents, you are criticising both their child and their parenting and they do not believe you have anything important to say. I hate to say it, they probably just think you don't like their child.

Nurserys aand preschools can initiate a statutory assessment. I know because the setting i work in started the ball rolling for a LO before i was senco.

But you still need parental consent. I have just done a caf too and that also needs parental consent.

If the parents are aware of the S and L issue could you not move things forward down that route and suggest that the need more support alongside the SALT? Maybe?

As someone else says, document everything so that there is evidence available for when things do start moving.

And definitely include it in your transition pack. But dont forget, you need consent for that too.

Surely the parent's views on whether these children need assessment or not are immaterial as the educational setting has a statutory duty to identify, assess and support SENs.

So if a child is giving significant cause for concern why can't the setting just initiate the statutory assessment?

I agree with Wet and others above - the nursery should get the ball rolling for assessments.

I have found it to be relatively unusual for parents to be so far in denial. Are they twins ? Could they be clinging to the hope that this is the explanation ?

They coukd be doing ABA in secret!?

The Child Psychologist is aware of them but has not observed them.

I made some observations (several A4 pages) that they agreed be passed on but declined to read themselves. Tbh it made for really depressing reading though I was very careful to be completely factual.

They agreed Ed Psych could observe them but since have not returned calls from Ed Psych to make arrangements. Ed Psych wants them to come onboard in their own time and won't push them. I think perhaps because the feeling is that they are so much in denial that to push them would be to alienate them. That's my fear too.

Saintly no they don't imitate.

Starlight they could well be. Hope so.

Probably not relevant to this situation, but in some areas an ASD diagnosis can (almost certainly illegally!) mean a child's access to therapies is limited - e.g a SALT unit may claim not to take a child with an ASD DX or SALT may be cut or go altogether.

Yep. My my ex-county there is no SALT or OT for those with ASD UNLESS a parent has won it through tribunal.

Agreed re SALT I was told I may be able to help him through language for thinking but discharging him as I am unable to help with his Autism........