DS1 with behavioural problems and suspected aspergers - help please!!

[jenniwren1]

I am new to this so not entirely sure how it works but desperate for some advice/support so here I go...

My DS1 is 5 years old and has been identified as having social and behavioural problems by his school. He regularly has to be removed from class because of tantrums. He often pushes and hurts other children and kicks, shouts and scratches teachers. Most incidents take place at transitional times of day or where there is less structure (e.g. tidy-up time, lunchtime). He frequently goes under the table or hides in the bushes and can be solitary in his play. I currently collect him each day for lunch to try and minimise incidents but still sometimes have to collect him mid-afternoon every couple of weeks due to behaviour. The school suspect he may have AS. He has been referred to CAHMS and we have an initial appointment next week. I have had a terrible couple of days with him and just don't know what to do for the best. We put lots of thought into our parenting - setting clear boundaries etc. but none of the usual "techniques" work - when he is having a meltdown he just zones out and it takes ages to calm him down. Without a diagnosis I am not sure how to handle things. He has always been challenging and argumentative with some "quirky" behaviours but didn't realise it would become this serious. He has two younger brothers and I'm worried they will start to copy his behaviour. I am desperate for a formal diagnosis to get some support but not sure what the process is or how long it can take. Would really like to hear from others who have been or are currently going through similar.

He is academically very bright and extremely articulate but serious behaviour problems. Please help!

jenni, we have recently been through this with DS (6), who sounds in many ways like your son (except that he doesn't hit out when he gets overwhelmed but gets very distressed). The Camhs provision, I think, varies a lot (if you do a search on here you will see how much!) but the initial appointment tends to be a factfinding/developmental survey. The waiting lists for actual assessments can be long (we decided not to wait and did it privately).

I think, from what I have been reading (and lots of people on these boards have more experience/knowledge), that the usual approach to meltdowns won't work because if your DS is in that state, any additional input (reasoning, persuasion and so on) just make it worse. You have to wait until he is is calm again before you try.

Can I ask what the school have been doing to help?

Thanks Lionheart. The school have been supportive (so far) but responses to his behaviour vary depending on which teacher (I'm sure some of them just think he is a very naughty boy and suspect we are to blame). The SENCO told me yesterday that staff are going to be undergoing some training on how to deal with this type of behaviour. The LA Early Intervention team have been involved and the school are supposed to be removing him to a quiet area at flashpoints such as tidy up time. However, I'm not sure if this happens each day due to staffing levels (they are a large recetion year with 3 x 30). They are trying to reintegrate him for lunch but yesterday was the first attempt and he blew up when it was time to go back in and I had to go and collect him. When he gets into that state he just runs away, laughs, regresses to baby talk or strange noises so no way of reasoning. It is helpful to hear that perhaps trying to get through to him mid-meltdown isn't the answer. At home I do tend to wait for him to be calm (he absolutely freaks out if you become angry or raise your voice even slightly). The problem at school is that he needs to be contained as otherwise he will run away or try and trash the classroom - this obviously takes a member of staff away and it often takes him a long time for him to become calm. I understand we may be embarking on a long and difficult process and just so worried about the impact on him in the meantime. Some of the other children find him frightening and we think others have started to try and provoke a reaction. All the children (even from the year above) know who he is because the meltdowns can be so public. Fortunately I am on mat leave for DS3 so currently around to deal with all this. Part of me just wants to keep him home with me but know this isn't the long term answer. He still likes going to school at the moment.

Hi Jenni - he sounds very much like my DS, who is also 5 and in reception, particularly the lashing out and problems at transition times and bright academically. He got a DX of AS in early April (took about a year in all from first meeting developmental paed - eventually done through CAHMS though, with input from various other professionals) and this has really helped schoolwise as they're at great pains to stress to me that he isn't 'naughty' and have really done lots (so far...) to help him. We had particularly bad problems with agression at the start of this term and school managed to apply for some emergency funding to get someone to support him (for the rest of this term) during playtimes and transitions for this term, and have just applied for statement too.

Still rather unsure as to how to manage his behaviour though - lots of praise for the positives, I think and I have to prompt him to remember to 'be nice' whenever we see another child/go into class - but I think he gets overwhelmed with all the hustle and bustle and it all goes to pot...

WW xx

I think it would help if they/you could work together try to pinpoint the precise triggers. Obviously it may just be sensory issues but not necessarily.

At DS school they have a quiet area where he can go if he feels overwhelmed (so helping to avoid total meltdown). This is where Cahms have come in with a nurse who has done a few sessions with DS on recognising the feelings, physical reactions that take place in an anxious state. She says the these strategies can be adapted according to the age and understanding of the child.

You can also find visual charts which enable you DS to point to where he is (happy, calm, angry) or identify his place numerically (five point scales--take a look on Amazon/ebay). You can get little cue cards which your DS might be able to use (which basically he can use to tell an adult he needs some quiet/time space).

They use a visual timetable and make sure he knows what is happening and when (I got DS a watch to help with this). If they deviate, as they sometimes do, they will explain it to him.

They make sure that the instructions they give about anything that needs to be done are as clear and simple as possible and that there is someone (TA or teacher who makes sure there is no confusion).

There are a few other things that have come to light with DS that never occurred to me before this process. At assembly the noise and crowds can be too much. At carpet time he likes to sit at the back. Since the teachers sound as if they are trying to help perhaps they could also think about how he inhabits the classroom/playground space as well.

The clearest explanation I had for the meltdown was in a book that used a computer analogy: Most people run on Windows but there are some who operate according to an Apple system. Input designed for Windows people won't always work for Apples and can cause a short circuit effect. Trying to add more Windows input just makes it worse. You need to step back, allow the Apple time to cool down and then maybe you can think about what happened (triggers, incompatability). The good news is that some clever people might be able to work together to find programmes (interventions) that work to enable Windows and Apples to communicate effectively.

I hope this helps (I'm rather new to this since DS has only had a diagnosis for a few months). I have found Mumsnet SN board and the archives to be absolutely fantastic, though, both in terms of interventions and understanding ASD as well as the other things relating to statements and so on.

I think that setting up a calm area for him is very important. It can even be something as straightforward as a table with a big cloth over it.

To start with, your ds will probably need some help to recognise when he is starting to feel angry/upset. It would also help if any staff members could also keep an eye out to see if they can spot any of the danger signs and encourage him to go to his quiet space. As he gets a bit older you might find that he'll be able to recognise the signs for himself and know when he needs some time-out.

Sometimes a social story can help to explain what your ds should do if he starts to feel upset. If you haven't heard of them before, they are basically a story written in a set way that explains what to do in certain circumstances. They can be made into a book with photos or any pictures that might be relevant to your ds.

It sounds as though at least part of the problem is being caused by inconsistency on the part of the school. If ds is sometimes being removed at tidying-up time and sometimes staying, then this can only be adding to the confusion for him.

What approach are they taking to reintegrate him at lunch times?

Thanks to everyone who has responded. It really is helpful to have these suggestions and will definitely discuss with the school.

The plan for lunchtimes is that DS will stay for two consecutive days each week initially. He will have lunch at a separate table in a quieter part of the lunch hall with two or three friends (people he feels "safe" with). He will then be given 15 minutes in the main playground on an activity of his choice. After that he will allowed into the reception playground (small outside space) with a few friends for the remainder of the lunch period. I believe that yesterday all went well until they tried to get him to tidy up and come inside. He refused and went into meltdown. As a consequence the school have said he cannot stay for lunch today but will try again tomorrow.

He has been particularly difficult at home the last few days too - refusing to get dressed in the morning (an ongoing problem) stamping about and not settling at bedtime. I am exhausted with it all and sometimes feel I must be doing something wrong. We have always been very calm and consistent - even more so recently - but nothing working. The computing analogy very useful.

jenniwren,

School are treading on shaky ground re informal lunchtime exclusions. I think that IPSEA's website has more information on this; I would seek advice from them.

Also arm yourself with a copy of the SENCOP (SEN code of practice) also available online.

"The LA Early Intervention team have been involved"
This is all very well and good but their words have no clout when all is said and done. School do not have to take any notice of what they say.

Has anyone mentioned the word Statement to you?. I would apply for a statement on your son;'s behalf asap from the LEA and do not accept no for an answer.

www.ipsea.org.uk is a website well worth reading.

AtillatheMeerkat - these links are extremely useful. I hadn't really understood the process and our "rights" until looking at these. We have just been complying with everything the school have asked for and I think we need to start being a bit more demanding. I wasn't aware we could request an assessment for our son to be statemented - LA/school haven't spoken to us about this. None of the current measures seem to be working so this seems the next sensible step, though from looking at other posts it seems this could take some time and we may have to be prepared to fight on his behalf...