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.

I understand the problems, parents who aren't ready to consider it, for example and just the possibility of getting it wrong if you are not an expert (or if you are!). On the other hand, you can be direct but not definite, I think.

Two people (one a SALT and the other a teacher) said 'He's very literal'. I knew from mumsnet that was a kind of code and probably as much as they were allowed to say...

But surely paeds, salts and nursery workers are allowed to voice their concerns and suspicions and approach parents directly? Or not?

There are a lot of parents out there that are in denial. Teaching staff can only make a suggestion to look into things further and cannot dx. If the parent refuses to act, it is only when it becomes a real issue at school that the money spent on assessment/ EP etc. So naturally the dx gets delayed - thinking particularly with HFA and girls in particular who hide the symptoms far better.
I remember at pre-school, DS1 had been there and seen the early years SENco for the area. He was dx at 3. When DS2 went there, there was another child who screamed spectrum. Mother intelligent, but in complete denial. To her her DS was gifted, and not into the usual games that they played and found the others too childish for him to play with. She was approached and asked if she would like the early years SENco to observe her DS. She refused. The head asked if she could pass my name on to her if she wanted to know anything about procedures from a parents perspective re outside of school support etc. she laughed it off. She told me that she had taken him to a GP who said that nothing was wrong with him.
Roll on 4 years - dx aspergers. She only found this out because the school that she wanted him desperately to go to, said that they could no longer cope with him and that they needed outside help and probably another school.
I feel desperate for those 'in-between', those that find school so difficult, but fit in just well enough not to be on the radar. What hope for them if the parents don't/can't push?

I agree starlight it should be left up to the parent how they deal with it but surely there is no justification for not telling.
I always compare it to other medical conditions, if a patient had Cancer they would inform them and arrange an array of tests to rule it out or start treatment as soon as possible. Why are our kids treated to a different standard especially when everyone agrees that early intervention works best. I mean whose interest are the medical/SEN profession really serving by delaying the inevitable in a large number of cases.

Yes. I'm not saying that you can make a parent accept what you are saying, or even act upon it. That is THEIR responsibility/job to decide what to do with the information.

But denying them the opportunitiy/information isn't right imo. And for what? To avoid your own feelings of discomfort, the wrath of the parent? What about the child?

I agree that professionals who are not qualified in dxing, should not be dxing, but raising concerns and even mentioning that the parent might want to have a look at certain support groups to see if they feel that the child might fit in with the symptoms is the only responsible thing to do imo.

Lenin, Early intervention can certainly be 'wait and see' or if that is deemed the most appropriate, or has the best outcome at the time.

A lot depends on how informed a parent is and if they have any genuine concerns themselves. I had 'experience' with DS1, so when i was told that DS2 (yr2) was being put forward for a social skills group, I did not immediately rush to get a dev. paed appt. I looked at it logically, took in family background, and don't believe that he has any major issues that are not just personality based.
If I hadn't have had experience it could have gone 2 ways. Rushed to the GP with concerns, or thought that the school were on top of it and I had nothing to worry about it.

Lenin I see your point, maybe it is not right for everyone, bit of a sweeping generalisation from me.
In our case, it was the HV who first raised some concerns in June and I wish she had actually said her concerns were re ASD not just speech delay. If I am really honest I couldn't have cared if the cleaner at the hospital mentioned ASD as long as someone did as we clearly did not have a clue about it.

During the time between June and Nov when he was dx we were simply focusing on the speech and language bit when we could have spent that time doing the things we are doing now which are more relevant to his dx.

Oh - yes about no.2.

DD (3yrs 6months) lines things up and talks about planets a lot. She also flaps.

Her preschool once expressed concerns. I must have looked like an in denial parent because I laughed.

There is NO WAY dd has autism, but until she started preschool her experience of play with a peer was to develop quickly the emotional literacy skills that would get her big brother interested in her. No mean task, which she became very adept at and still manages it.

In fact, on Friday we took the kids to an autism soft play thingy and she ran her own SALT social communication group in the sensory corner with two boys of around 10 - explaining the rules of conversation and making them take turns. She is 3 and a friggin half. How is it that 'professionals' can't manage it?

I can see child labour earning potential there starlight - peer group mentoring definitely

Ah Professionals... You mean like the one Paed who told us there is no point spending money on therapies/intervention for DS as there is no evidence that anything works.. thankfully she is no longer involved.

Actually, I thought she was helpful to ds, but it was only really when I showed a few SALTs at the special schools we've been visiting these past few weeks, a video of ds interacting with her (the purpose was to show what ds was capable of) that I realised they were all watching HER instead of ds.

Her compensating, cuing, prompting, careful steering of the conversation/game to meet her needs whilst 'tricking' ds into thinking it was his agenda etc.

I feel less guilty that ds isn't in full-time school now as she has probably been better for him than anything a school could have offered. I can't believe I didn't see it until now. We are so lucky!

So perhaps I should put her up for sale playdates?

Make use of your DD now starlight as when she gets her own little set of bessies, DS baiting might not seem so much fun!

Thank you Starlight you don't probably realise it but your last post meant a lot to me... We have DS2(3months) and we are absolutely terrified how it is going to pan out in the coming years so it is good to hear that siblings can be a blessing in disguise. we are hoping that is the case for us as well.. (fingers crossed)

Sorry about the thread hijack.. As you were now...

We are allowed to refer but not to suggest what dx might be

Hi all

can not stay long as I am currently in a long in depth debate on another web site, which could last weeks lol.

The problems are multiple, the professionals like lisad123 can be worried about future legal action which stems from the Wakefield case, it has even got to leading researchers who are not prepared to comment on their own research until it has 200% verification by their peers. Which why some local authorities prevent such suggestions being officially made.
The other major issue is that so many of these development problems can vary from child to child, and currently we still do not have a full research based understanding of how the brain develops and works, we do not yet have the technology.
Neuroimaging has help increase the researchers understanding of these types of issues but they are still a long way from having the type of answers parent expect they want advice regarding their children. There are many unknowns and parent like me and you tend to demand specific answers. And the professionals are not very good at saying "I /We do not know the answer".

As has been mentioned the denial by parents of these types of issues is another problem, we have a family history of generations of denial the social stigma etc. Most of these issues have a genetic origin, which can be difficult to explain, so you are not only talking about the children you are also talking about the childrens family members, sisters, brothers, mothers, fathers, aunts, uncles, grandparents and cousins. All of whom may well have some major or minor related issue. which in days gone bye would not have been diagnosed as some form of disability. So I was missed as having APD, as was my DW, and we only found out about our APD as a result of helping our children over the last 20+ years. If you accept that you have one of these types of disability then you have to look back over your life and recognise the difficult bits, the bits you would rather hide from others, which can include your family. Which then makes your children isolated as you are not able to provide the role model they need to work around their problems. The denial issues still exist with some of the extended family.

The big issue in some disabilities is the enormous gap between current research, and the general or public perception of these issues, which is another mixed bag of issues, lack of professional requirement to keep pace with current research, the marketing interests of influential lobby groups, and a lack of any form of Educational Research Council.

sorry about the rant.

I don't think it's fair to blame yourself for being in denial when everyone is telling you your child is fine, and all kids develop at different rates, and you shouldn't compare children etc, etc.

And when you do explicitly raise a concern people still tell you the same thing.

And when none of the professionals your child meets raise a concern.

How can you blame yourself for being in denial?

I am so against this current fad of saying all kids are fine.

I am constantly re-educating everyone on the primary board :) Yes, if your child can't read or write it's a problem. Yes if they can't spell it's a problem. Yes if they have no friends it's a problem. Yes if they fall over when standing still it's a problem.

So I guess Lisa, it's vitally important that one way or the other you let this parent know your concerns. Otherwise you're part of the problem :(

I was lucky, DS1's playgroup manager reported all his behaviours to me very promptly (not joining in, playing alone, repetitive play etc) and he was quickly referred to the Preschool Home Visiting service.

He'd already seen a Paed for balance problems, which I didn't know were related, and when playgroup reports were tied in with this, I was told it may be autism. I got the shock of my life tbh in paed's office. Now he is dx HF ASD age 4.

I don't think you should name a possible dx for loads of reasons:

1> you are then excluding the possibility of other dx from the parents' mind
2> not all parents will understand that you are not diagnosing but suggesting and if the dx is not given they will forever think but so and so said
3> you should just suggest that if a parent has concerns they should see the appropriate professional - ie gp to paed.
4> you are there to assist with one particular thing, not to veer off into something you are not qualified or insured to do

It is hard - I work in early years and we are not allowed to ever mention what we think could be causing problems (because we are not professionals in that field and would no doubt make some horrendous mistakes.) However, it is frustrating that all we can do is make lists of behaviours and skills that do not meet the 'norms' for the majority of children and pass those on to the LA SEN team. What does make me cross though is that some LA outreach teachers do sometimes seem to think it is in their remit to tell parents who have expressed their concerns that 'it is definitely not ASD' on the basis of 30 mins observation in the child's familiar setting where all sorts of things had been put in place to allow a child to cope.

I think I am currently half in denial /half acceptance whilst we wait for our DS referral to the paed unit. He is 2.8 yr old and has speech delay (about 5 words) and social issues - doesnt always like group play with other children, will hit visitors to our house, head banging, slamming doors, screaming. But on the other side he will actively seek out cuddles and affection, engages in some eye contact, can laugh at funny things or sometimes when he is having a quiet moment will seem to think of something funny and chuckle away to himself. He doesnt line things up - throws things though. Can watch whole films and knows the cues (music etc) for happy, sad, scary, exciting moments and reacts accordingly. (I know tv is the devil but he really is obsessed with it). He has genuine emotional connections with his parents, his carer at nursery and grandma's. Loves physical play - being thrown on the sofa, hung upside down etc!
We are the ones that have had to mention the autism word to get the wheels in motion - even at the risk of being seen as over anxious parents - we're not - but realised early on when trying to get a SALT referral that this all takes so long! HV did mention referral to Paed months ago but I think we just werent ready at that stage - but she has only really ever gone on our instigations - as we have started to think its a possibility then stuff has happened.
I think we would have felt a bit overwhelmed if it had been the other way.
Nursery have also been proactive and have arranged for a presens (??) to come and observe and give them advice on how to work with DS.

But I know when we have our appt DS will act in the worst way because of the situation - if I take some films of him on my pod will they look at them to see him in normal situation?

A mum with a DC with autism did say to DH at a playgroup this morning though 'oh has your DS got autism too?' because of how he was acting. It is how he can appear in public - there's no denying it and its exhausting. :(

The professional denials pee'd me the fook off. I was made to feel like an over anxious Mum even AFTER he'd totally failed 2 school placements. There's 3 generations of strong family history and I made my 1st request for EP involvement whn he was 3.

He's likely to get a formal, firm meaningful diagnosis later this year , after four solid years of fighting for it on my part. He'll be rising 8, yet concern over his development was raised at 4 months. Whether that diagnosis will be ASD I don't yet know but it's certainly something along those lines.

We have doctors in the extended family and my own Mum is a retired SENCO - unlike many others I wasn't given the luxury of denial by my own lol! Though most of the family have been incredible on the moral support side too as I've fought my PCT and LEA.

rocket74 YES! to taking in film clips. It is so hard for a paediatrician to know what a child is really like when they only have 45 mins in a small office, where the child is out of their comfort zone. They appreciate any information about what the child is like. It's always useful if you can quantify any behaviours that give you concerns - the number of times it happens or the length of times it goes on for or the actual words he says, etc.,etc.. So many descriptive words are so subjective, it's difficult to get a real 'feel' for the child sometimes.