Challenging behaviour / ASD diagnosis - help!

[LittleMissSnowShine]

First of all - thank you to everyone who has already pointed me in the right direction when I have been posting about this over the last year or so!

And apologies that this post is a little long

DS1 has just turned 4. There have been lots of signs, particularly around some of his more challenging behaviours, that he was a little bit different from most other kids but not really anything severe 'enough' that it was easy to come to the conclusion that he needed to be assessed for ASD. I felt that he should, though, and got lots of support from MN and from the leader in the small community playgroup he attended last year 3 mornings a week and eventually DS had his assessment last month.

We received the report from the assessment in the post today and I feel that it is generally accurate. There is no diagnosis on the report, which we knew that there wouldn't be. We have been invited to go to a feedback session with the pediatrician who met with us last month and wrote up the report, just to discuss what is in the report and to discuss where we go from here.

She told us 'off the record' that she felt that there would be enough criteria met for us to proceed with an ASD diagnosis. She also said, though, that DS1 is very bright and very capable and, as such, he is learning his own coping strategies which have lessened some of the behaviours which led to him being referred by Speech and Language / Health Visitor for ASD assessment.

What she was basically telling us, I think, is that whether or not we want a formal diagnosis put in place is up to us.

I have posted this over in on the Special Educational Needs board as well but I wondered if there was anyone with any experience of this over here. My biggest concern is that DS's behaviour issues might make it difficult for him to settle well at pre-school and then in primary.

ASD diagnosis isn't an area I really know a lot about and most of the information I have been able to find online is about what to do in order to get referred for a diagnosis or what to do after you receive a diagnosis, not whether or not you should want a diagnosis for your child!

DH feels strongly that a label placed on DS1 at this stage might not be helpful. He is only 4 after all and is learning ways to cope on his own and 'growing out of' some of his sensory issues etc. and perhaps labelling him will only lead to him being singled out and treated as different.

The pre-school DS will be starting next week seem to think we should be pushing for a diagnosis because then they can use this to get the Education and Library Board in our area to provide a classroom assistant for DS. I am a little suspicious that they want to keep one of their special needs assistants employed and I'm not sure that their motivation in pressing me to do this isn't without some self interest.

Basically I am confused!!! I know the pediatrician will make recommendations when we see her on 25th Sep but I want to be prepared before we go to see her - what is the best outcome? Is there an advantage to having a diagnosis in place? If we don't go down this route, what happens if DS starts to struggle when he reaches primary age in 2015?

Thank you so much for your insight!!!

hi littlemiss, my son is 11 and shows signs of ASD. He should have been diagnosed in year 1 but unfortunately my stbxh didn't want him to be labelled also. I feel that this has prevented him from being handled correctly at school although they now have a good SENCO team in place it took several years. It has taken over a year now to get to the place where he is going to have his indepth assessment maybe october/november or December which is great. STBXH always thought that our son would 'grow out of it and he's a boy!' but it's not the case and now he's pushing for it himself! ironic really, wish I'd pushed it in year 1!

My advice is not to worry about labelling and not look at it like that, it used to be like that years ago, now it simply means that the school have to provide the support for your child through his lessons and he will get the help he needs immediately rather than waiting for years and years to get anywhere.

Go for the diagnosis as soon as you can, get all the help you need for your son, he deserves it and you do too.

good luck

Ime, the older children with asd get, often the more obvious the differences become to their NT peers.

you say that your DS has a difficulties in various areas and challenging behaviour. If offered a diagnosis (and it is a diagnosis, not a label), I would certainly take it.
there is much more support available with a dx in place. And if your ds has asd, in all likelyhood he will need extra support at school. Why would you not want that? I cannot really think of any downsides for a dx.

If your DS has asd, why would you not have him diagnosed, what is it that worries you about a dx?

If your DS meets the diagnostic criteria, he has the condition. He has already been diagnosed. That fact is information for you and your DS to do with what you choose.

With it written on the diagnostic report, your DS will have more access to support if he needs it in the future. If he doesn't need it you won't ask for it.

Fear of labelling is a strange phenomenon limited mainly to medical professionals who don't get involved in battles for educational support.

Every professional I have come across with my DD's, who both have AS, has been very keen to support them in finding strategies to overcome their symptoms. That is the whole point of their intervention. Nobody writes of children who have ASD. The diagnosis just helps people to understand better where to start supporting them.

Our DS, 5 and a half and just started in Year 1, got his ASD diagnosis on Tuesday.

For me, it was a huge relief.

Our DS is bright, funny, loves people and is doing well academically.

Even when we started the process of health assessments and referrals, and had the initial community paediatrician assessment 6 months ago, I would have been very sceptical about the idea DS had ASD.

But since then, his coping mechanisms have seemingly not been able to keep up. His main triggers are interactions with his peers and having to follow instructions. Reception can be a very challenging environment for a child with ASD whose needs are not being met. DS's violent outbursts escalated, and proved impervious to the behaviour interventions (designed for NT children - because DS had no ASD diagnosis).

I don't want to scare you, but I would certainly emphasise that the way you treat problem behaviour in a NT child and in a child with ASD, while having some shared themes, should have some very different aspects. If you have the diagnosis, your DS's school will be starting off on the best track.

Thank you all so much, as usual MN is wonderful as always!

I think we will go ahead with diagnosis, I do think DS needs the support. My main concerns would be:

• who else has access to this information and who are we obliged to disclose it to?

• if DS does cope ok with pre school (and it is a big if) this year then I would prefer if he didn't have to have an assistant in primary school. I have worked with ASD teens in the past and I know the extra assistance can be very helpful when it is needed but if DS doesn't actually end up needing it, can the school "insist" on it?

• and finally, if DS does develop good coping strategies and his behaviours etc continue to improve, can we revisit the diagnosis down the line?

Great to hear all of your experiences! I know a lady whose 2 DSs both have ASD but quite severely and I guess the 'problem' with my DS is that it wouldn't be quite so apparent with him. This has all given me and DS plenty to think about and discuss before our next appointment on 25th. Thanks again!

I'm not 100% sure on the disclosure, but generally health information would be confidential to you and your DS. The school will probably be told - but then why wouldn't you want to tell them? Other parents will only know if you tell them.

On the second point - trust me, if your DS doesn't need the help, it would be extraordinary if he was given an assistant.

On the third point - I don't know. ASD is a lifelong condition. I would imagine that it is at least possible for a person to develop skills sufficiently that they would no longer notice the impact of the condition day-to-day. But that's a long way down the track.

And remember, just because there is stigma attached to many conditions, including ASD, that doesn't mean that the diagnosis is a bad thing. Stigma will almost certainly reduce a lot over the next decade - and we'll all do our little bits to try and help that.

Good luck whatever you decide.

Frusso are you in the UK? I don't think we are getting any follow up paed appointments post-diagnosis.

Ah - well we only got a verbal diagnosis this week, and haven't had the written report yet, so I'll look carefully at the paperwork. Thanks Frusso.

Sorry for sidetrack OP!

I'm sure it very much depends area to area but I had spoken to a few other mums who had pre schools and primaries be very pushy / insistent on their DCs having assistants, even though many of these children had no fx in place, some hadn't even reached referral stage. Now obviously if your DC was struggling and needed an assistant or their behaviour was so extreme the teacher genuinely needed extra support in the classroom that would be fine. If that wasn't the case, though, a few mums had expressed to me their concern that the school was receiving extra money from govt / education and library board for having a certain quota of children with additional needs on their books. Having experienced DS's new pre school already being a bit like this, even though DS doesn't start with them until next week so they have no idea whether he needs an assistant or not, I have become a bit wary about this.

Ime, from working with ASD teens, some had really benefitted from having an assistant, others who we felt really would have been able to cope had they been supported in other ways had sort of come to see their assistant as a crutch and their condition as an excuse for any type of behaviour.

I know this is definitely not true across the board and the young people I worked with for three years were all referred to our programme due to v challenging behaviour, so they were definitely the exception rather than the rule.

But my gut feeling is that I only want DS to be allocated an assistant in school if he genuinely needs one, rather than to further the school's agenda. I know I am probably sounding very much on the paranoid side but with my work background I am very cautious about what is in the individual child's best interest.

But you are all very reassuring! The stigma definitely needs to be chipped away at, I am v embarrassed to find that I am more susceptible to this than I would have realised

But we're not talking about teens here, we're talking about 4-5 year olds. And 2 adults to 30 of them is not an over-supply, imho.

But my experience is really limited to DS, and he needs marking 1:1, at least at the moment, for the safety of the other kids.

Is there really any risk that 1:1 attention would be a disadvantage for almost any child at that age? Unless the support person was not very good at their job and intruded inappropriately?

Caveat: DS's school is fab, and the emphasis has always been on trying to skill DS up to manage by himself. They are also definitely financially down on him, because they are currently funding all his support out of their own budgets. That has never been their primary consideration.

ASD is not a "label". It is something that is intrinsic to your child (if he has it). If your child had asthma, then your DH probably wouldn't consider that to be a label (unless he's the type who believe that, in his day, no one had all these silly fussy so-called allergies). If your child had diabetes, then he almost definitely wouldn't consider that to be a label.

But instead of having a physical illness or disorder which can be sympathised with and even treated, your DS probably has a neurological difference that makes it difficult for him to function to the exacting standards demanded by society. Not giving it a name, for fear of labelling doesn't make that difference go away.

You will find that, over time, some of his traits will become milder. Unfortunately, what is more common with bright DCs with ASD or AS is that they can be come increasingly anxious. This anxiety is heightened by people not understanding their needs. It's often the onset of this anxiety and the behaviour arising from that which precipitates a quest for a diagnosis, often after their child's mental health has really begun to suffer.

I'd honestly grasp everything offered to you and your DS with both hands. If he is one of the very few children who do largely grow out of it (my DN is nowhere near as severely affected as he was at your DS's age, but he still struggles greatly with certain things, my DS1, OTOH, has not grown out of anything) then great, you can get the diagnosis downgraded or removed at a later date.

You'll find that the busiest boards where you'll meet a lot of parents with similar kids are the Special Needs Children and Chat boards, btw.

If the system works where you are such that your DS would be given an assistant, regardless, then if he didn't really need one, that assistant would probably be doing a lot of photocopying, resource preparation and group and 1:1 work with other children.

We have follow up paed appointments, too, Isitme. DS1's been transferred over to CAMHS because of his ADHD medication and mental health issues, but DS2 still sees the community paed annually. Like Frusso, there's often something that crops up and needs dealing with via a referral.

I don't know where you are OP, but I can't think off the top of my head of any children who had full time 1:1 at pre-school - some with quite serious needs had some extra hours of funding.

I work in a primary school and the only children with 1:1 LSAs have statements, and for example quite severe autism or conditions that mean that for their own safety they need support at all times. Other children may have some hours of funding for support allocated to them.

For us a diagnosis helped us get further support for DD1. It is hard when they are smaller to know what their needs will be as they get older and DD has clearly increased her needs as the demands of school and her peers change over time. When she started school we didn't know she had ASD, simply she had some speech issues and but something wasn't quite right but I couldn't determine what. It took us three years from there to get a diagnosis and at this point she didn't have or need 1:1 support. She is 10 now and in a specialist school where she is in a very small class with high levels of support but not 1:1 which for her works very well.

I would suggest you grab any help offered by the nursery now, and hard though it is to hear things that feel negative about your child, if nursery feel 1:1 support may be needed at school then I would push for the relevant paperwork to be completed and sorted as soon as possible before school starts so that support can be made. It doesn't need to be full time, and if done well the child will not become reliant on that person but rather they will be a focus point for the child to help keep calm, focus and be guided to think about their work.

Hi OP, I'm posting as a teacher! What frussi said is right, there is no extra funding now for children with needs such as ASD. However, if there are a proportion of children in the class with your DS with SEN, it will give the school ammunition to get funding for extra help in his class.

As a teacher, it is helpful to know if a child is in a similar position to your DS so that they can be supported and guided properly. I don't know of any teachers who would behave differently because of a diagnosis and they shouldn't disclose it to anyone other than staff at the school either so don't worry about that. Good luck and hope all goes well for you

But my gut feeling is that I only want DS to be allocated an assistant in school if he genuinely needs one, rather than to further the school's agenda.

One to one TA support is rarely funded, even for children with statements. There are some who need an adult on the constantly but most are supported by TAs working with them in small groups or having intervention only at specific times of the day.

One thing that is very clear is that parents generally have to fight for every bit of support. Your child is unlikely to get everything he needs, never mind more than he needs.

Each school has a SEN budget from which they are supposed to provide the first 15 hours a week support for any child who needs it. If the child needs more than that, they should have a statement/EHC plan which details their individual needs and how they should be met. The statement/plan comes with funding to cover any support detailed over 15 hours.

Schools do not put support in place for children if the parents disagree with it. I am aware of several children whose parents are in denial about their support needs, the children are clearly suffering from lack of support and the schools are powerless to put it in place. If the parent says no it does not happen.

Hi everyone,

I just wanted to come back and say thanks again for all your in put and advice! We had a feedback appointment with consultant last week and DS is going to receive a diagnosis. It can be revisited down the line if his development stays on course and we can keep the information private or share it with the school as we see fit.

I feel a bit overwhelmed by it all but also kind of justified - I knew DS needed extra support and that there was something a bit different about him, but so many people along the way have implied that I was over reacting and it was just tantrums or 'boys are slow to speak' etc. I have really curtailed my career over the last three years to be at home as much as possible with DS, even though we have suffered financially because of it, because he has needed a lot of 1:1 attention that he wouldn't be able to get in a daycare nursery. He is in week 3 of pre school now, though, and although he finds it tiring and can be a bit tearful from time to time, largely he seems really happy there, is settling well and even eating school dinners...with veg! He is so picky at home i can hardly believe it!

Thanks again to everyone for all your suggestions, I'm sure I'll be back with more questions in the months ahead

Thanks for the update.

so many people along the way have implied that I was over reacting and it was just tantrums or 'boys are slow to speak' etc.

This may well not change just because he has a diagnosis. There are a lot of people out there who think they know about Autism and feel free to express very loud, ridiculously uninformed opinions. Just ignore them. You know your child best