My son's anxiety - any suggestions on how to help?

[sis]

Okay, I think we need help on this problem with ds but am not sure what sort of help.
Ds is almost 8 years old and when he was five he was diagnosed as being on the autism spectrum (high functioning) and being dyspraxic.
He has had lots of ocupational therapy and had made amazing progress, however, about 18 months ago, he changed from being okay about being in a rooom on his own to insisting that someone be with him. He became very anxious when left on his own even for a couple of seconds (eg if I told him I was just going to get something from the kitchen whilst he was playing in the lounge.
When we ask him about it, he insists that he is scared of 'baddies' getting him - we have done the looking all round the room to check that there are no baddies but to no avail.
Over a period of time, he gradually got a bit better - we could go out of the room as long he knew where we were and how long we would be gone for but had to stay on the same floor as him - so no popping upstairs whilst he played downstairs.
Unfortunately, since the start of the school year he has gone back to how it was in the early days and even wants us in the toilet with him.I now think that we need to get some assistance in helping ds overcome this problem - or rather, to help him cope with his anxiety. To be honest, I think I need to know whether this is something we can help him with or whether it is an aspect of him that we just have to accept.
Any ideas on whether I should ask for a referal to a child psychologist to try and help him or ask his OT for some help? I know it is a very small thing compared to the things that a lot children of parents on the SN are struggling with but if there is a way to help ds then I'd really like to find it.

sis

The first question I would ask is whether your DS has a Statement. If he does not this may well be something you should consider to get for your son. A Statement is a legally binding document offering both support and strategies to help him.

Are school being helpful with regards to his anxiety?. Have you contacted the Senco re these issues, has there been any ed pysch involvement?.

Contacting the NAS may well be of benefit to you as well if you have not already done so.

My son (sounds very similar to yours) has exactly the same problem though he's younger. Drives me demented!

hello sis, we went through exactly the same problem with our DS, when he was roughly about the same age as your DS, he has AS and has suffered with anxiety terribly for over 2 years now.

I asked for a referral to see a child psychologist and they really helped us with understanding what was causing his anxiety which in our case was school and they also helped with teaching us to help him come to terms with his anxiety as well.

Sis, we also have this with our DS (aged 7 and AS). As with your DS, we find it worsens with any general increase in his anxiety levels, such as the beginning of term, events like Christmas etc. It does improve as he settles down after these times, so I have not sought any help as yet. We tend to just go along ewith his requests until he gets over it, but it can go on for weeks at a time.

It's pretty par for the course for many children with autism, but it is worth asking to see someone. It has taken my 19 year old years to be able to control his anxiety and obsessive worries. We went through the worst patch ever with him after 9/11 which was followed by the anthrax scare. Although he knew that the chances of us receiving a letter with anthrax in it was probably zero he would not let us open a letter and wanted the post stopped. We went to see his Psyc who explained to him that sadly this was part of his AS and he would probably always have to battle it. I thought great that's all we need negatives. But it actually turned out to be a positive because he realised that this was something that may well be a part of his autism but that he could work on and he has.

It's much harder with a younger child. My 9 year old can have dreadful anxiety and it's always when something is happening in his life that is stressing him. Usually with him it's social overload. He loves playing out but becomes totally overloaded by it. Last year he became totally obsessive about creepy crawlies in our bathroom to the point that he stopped using it all together, and was going backwards and forwards to his Grans house (thank goodness she lives in the same Close as us ) to use her loo. When the nights began to draw in and the other children stopped playing out his obsession slowly faded. It had gone by Christmas. This year he worked out himself that playing out stresses him out and so he set time limits on himself that he has to do this at 9 but that he has this level of self awareness at 9.

Oracle

Wow, thanks for all the responses - it is reassuring to know that ds is not alone but I am sorry that so many children on the spectrum are going through this.

We did just get on with it for a while in the hope that things would improve over time and that this was a typical phase for all children to go through but I think I thought it was more linked to him being autistic when things got much better over over the summer holidays and then very suddenly back to square one after school started. If we can get help to sort out what is the cause of the this anxiety is and perhaps some strategies to help him cope then it is definitely worth asking for a referal.

To answer your questions: ds has just started juniors (change of school = rocketing anxiety levels!) and I have had a meeting with the senco and his class teacher who were both very helpful about allowing ds to do exercises and tasks to help him settle into his schoolwork. He does not have a statement - he does well academically at school and is not disruptive so he school have taken him off their 'action list'.

One of the problems with ds is that he is very good at hiding his anxiety at school - for example they covered the fire of london last year and it caused us weeks of extra anxiety at home. We had to keep going over why it couldn't happen now and show him our smoke alarms etc. When I eventually reached the end of my tether and spoke to the teacher about how anxious he was she was very apologetic and said he hadn't shown any signs of anxiety at school but that she would talk to the whole class about how the fire of london couldn't happen now. His anxiety switch seemed to be almost instantly switched off once the class teacher had had her talk with the class!

So I think, I will talk to his teacher and the Senco again to see if they can help with the anxiety and also try and get a referal to a child psychologist. I will contact his OT as well as the GP to see if the OT can speed up the referal process.

Once again thanks for your all your help - it has really helped me and dh decide on what to do next.

sis-your DS sounds so much like mine! He is doing the Egyptians as his school project this year (he is year 3-did the Fire of London last year too!). You can imagine the worrying this is causing with all the talk of mummification and so on! His teacher this year is great, though, and is aware and looking out for any problems that result.
Good luck with the referral. We were given some strategies for helping with DSs anxieties when he was diagnosed. (in fact the psychologist felt his anxieties were so extreme he may have an anxiety disorder alongside the AS. Perhaps this could be the case with your DS?)

Hi Sis,

Re your comment:-
To answer your questions: ds has just started juniors (change of school = rocketing anxiety levels!) and I have had a meeting with the senco and his class teacher who were both very helpful about allowing ds to do exercises and tasks to help him settle into his schoolwork. He does not have a statement - he does well academically at school and is not disruptive so he school have taken him off their 'action list'.

I did say "oh no" to this, particularly the part about him being taken off their "action list". This means he is getting no extra support or help whatsoever in class, he is being treated the same as everybody else. The teachers don't have time to work with him. His situation re anxiety is unlikely to improve unless work by school is done with him to improve his school life. This is also why I am suggesting you apply for a Statement.

Think you are wise to meet with the SENCO and teacher again (preferably together). If you have no result with either (and at the very least he needs to be on SA plus despite his academic aability) I would tell them that you are going to write to the LEA for a statement.

Many such children are indeed highly adept at hiding their anxiety only for the parents to get the full brunt of the days frustrations and worries when the child returns home.

Does your DS see a developmental paediatrician at the CDC?. GP could help with regards to getting a referral to this person. Its a good idea to get the OT involved again also.

www.ipsea.oeg.uk are good also and you could seek their advice too.

Sorry

that should be:-
www.ipsea.org.uk

Thanks for the warning about the Eygptions, Tiggiwinkle - it has reminded me to mention what we went through when they did the fire of london to his new teacher.

AtillaTheMeerkat, I agree with you about ds's needs being overlooked by the school taking him of the action list and when I see his teacher and Senco agian, I will try and get him put back on Action or Action Plus (he did have OT over the summer holidays so I think he should be on the Action Plus, shouldn't he?). Thanks for the tip dinosaur, if they are reluctant then I will try for Action as a 'watching brief'.

Sorrell are you and your son coping or have you asked for a referal too? How old is your son?

Attila and dinosaur-I am due to meet our Senco in a couple of weeks and last time I met her she mentioned taking DS off the "school action plus" for much the same reasons. I am really not happy about this either-what arguments can we use against this? (Sorry for asking on your thread sis but our cases seem very similar!)
Along the same lines, the Senco insists DS is not statementable as he is doing so well academically.
She says this shows he is "accessing all areas of the curriculum"-which she says means he does not need a statement!

Tiggiwinkle, please ask away - we all seem to me in the same boat so I am sure the responses you get will be helpful to me and ds too! Let us know how you get on and which arguments had more effect.

Tiggiwinkle assuming that you have seen the other thread here stating that 'Every Disabled Child Matters' I would personally draw the schools attention to this. One of the 5 aims in Every Child Matters is to enjoy and achieve. No matter how well a child is accessing all areas of the curriculum it can not reach it's potential if it is not enjoying and achieveing. This is BIG issue with the government right now and every Authority has been appointed an officer to make sure that every school meets every aim. If you find out where your local government office is they can tell you who has been given the job of looking at this.

Statements are not just handed out because a child is failing academically. If the mental health of a child is suffering then their needs are not being met. Would it not be worth giving IPSEA a ring. Far too many LA's lie to parents about statements and they appear to have brain washed all of the SENCO's to. Do not let them remove your son from School Action Plus. It's hard enough for a child going from Primary to Secondary on School Action Plus - they really do need a Statement in a Comprehensive set up. But without School Action Plus they will be on their own. It's never too soon to think about these things because they do happen. Without a statement there is no transitional review for parents to attend and in many Authorities no transitional plan for the child.

This is happening to a friend of mine right now. Her son was taken off School Action Plus and she has just found out that next September he will move to the Comprehensive School and is expected to 'fit in' just like every other child in his class. His Mum knows that it is never going to happen and now the LA are saying but he does not need a statement and he is not ever on School Action Plus!

Oracle

hi everyone,just been reading all your threads and its like reading about my own child who has a dx of asd and has peaks and troughs of anxiety but annoyingly[for me] doesnt show it at school..his stress levels are sky high at the moment since a week before going back to school..ibs type symptoms , but wont go to school toilets so holds on all day[ hates the sound of flushing toilets!]will pee but thats all and is extra fast at school in the toilets[ive witnessed it!!] so once he gets out of school he has tummy ache and then a few bouts of diarrhoea through stress..every night!! plus he has resorted to not eating ANYTHING at school..which is so bloody annoying as we has now gone about three steps back as last term he was managing to eat his very restricted lunch and even a banana at fruit time ..now its nothing and he flatly refuses to eat regardless of what they do!! so he doesnt eat from 7.30/8 am till he gets home from school then he doesnt stop eating and im feeding him every hour!!! he has become highly confrontational with us and even agressive [ not like him] he cant control his anger and lashes out a lot at his little sister poor thing , and shes so understanding and caring towards him ! he flatly refuses to do anything asked and will argue that black is white!! we have asked to be referred to cahms tier 4!! as tier 3 dont seem to be able to offer much guidance and we need behaviour management for us!! i dont know how long this episode of stress will last but xmas is coming and this is another tension point as things are not always the same at xmas !! whooppee..maybe by next summer!! by then i1ll be in the loony bin as i cant take much more .his mood swings are something to be battled with..one minute hes crying and has regressed like a baby saying he wants a cuddle with his mama..next minute hes hating everybody and trying to hurt anyone that comes near him followed by howling and hiding..ho hum...what fun.. plus weve realised hes possibly near sighted but wont wear glasses and we are waiting to see a behavioural optometrist as he gets funny things happening to his eyes as in letters move and squiggle and he sees different coloured flashes and darting red zigzags..apperently children with asd can have problems with their eyes ..has anyone else got experience of this? anyway im off to bed now..school battles in the morning..he doesnt want to get dressed! btw how are you tiggywinkle..long time no hear?

bambi my eldest has something called KC Keratoconus which is a very serious eye condition - however the symptoms are nothing like your sons. I wondered if you have ever heard of a guy called Ian Jordan - eye is the business with eye problems and ASD. Ian was the guy who helped Jacqui Jacksons son Luke (Geaks Freaks and Aspergers Syndrome) here is a link to his site. I know Ian so is you would like any more info just yell.

Oracle

www.visualdyslexia.com/recognising.html

www.visualdyslexia.com/default.asp

Sis

I would agree with Oracle's post dated 1st October and particularly the second paragraph in its entireity. I have seen this happen time and again; if these children are not on any action plan whatsoever then they will be treated the same as everybody else. No plan at all means they will not be assisted in any way.

If there is OT involvement then SA plus should be in place at the very least.

I know of someone with AS who is in secondary school and cannot cope with all the changes even though he can manage academically. This is the argument they are using with yourselves; his mental wellbeing is suffering as a result as he is coming home completely stressed out. Hides it at school well but meltsdown at home.

If the school still wish to take these children off thse plans then I would say, "I as the parent will directly apply to the LEA for a Statement to ensure his needs are met because you're not going to be able to meet them". I would stand firm with them; these are your children we are talking about!!!. You can write to the LEA yourself, you do not need the school to do it and it is adviseable to write the request yourself (you know its been done then and you have the right of appeal, school do not).

Would urge you all to speak with IPSEA (www.ipsea.org.uk). Bambi - does your DS have a Statement?.

These are your children - you are their best and ultiamtely only advocate

Many thanks Attila and Oracle. I will certainly contact Ipsea before my meeting with the Senco. In the past she has told me that my local authority (an Inner London borough) has a blanket policy of not giving statements to AS children. I take it this is not lawful?

Hi Bambi-nice to "see" you again! It sounds as if we are in pretty much the same place with our DSs. Regarding the eating and toilet issues-my DS also has a phobia about using the school ones to open his bowels. His (very good) new teacher asked me what he would do if he had to go at school (tummy upset or whatever). When I asked him this, I found out that he was deliberately not eating his packed lunch to make it less likely that he would have to go. The teacher has now made an arrangement that she will call me if he feels the need to go at school, so I can fetch him and bring him home. Luckily we live very close to school! But it does seem to be helping.

"In the past she has told me that my local authority (an Inner London borough) has a blanket policy of not giving statements to AS children. I take it this is not lawful?"

Correct. It certainly is not lawful - LEA's cannot operate such blanket policies full stop. IPSEA would be very interested to hear of such things. LEA's cannot claim ignorance either; they have clear guidelines from central government.

Tiggiwinkle blanket policies are certainly illegal and the DFES sent a letter out to all Authorities last year - probably a year ago now actually - reminding Authorities about this point. IPSEA had pressed for this and they will be the people to help you.

I think if I were you I would also find the Children's Commissioners report that came out about 3 weeks ago stating that children with autism are being treat dreadfully by the system and that things have to change.

Apologies for any mistakes in this been up all night with youngest with a high temp and a sore throat.

Oracle

tiggywinkle..have you had to bring him home then to go to the toilet? maybe this is why my ds doesnt eat!!ive had wendy here this morning from BAT and she has helped enormously regarding making us relaise we have to decide which battle to fight at the moment and stick with that issue as we cant seem to do anything at the moment with him..shes going to go up to the school and help fight the battle and get them to do understand that he IS anxious at school although of course he is not presenting any problems there!! apart from the not eating issue!! but he is so stressed out a t the moment so we need to do something esp before xmas lands on us with its normal fear inducing episodes!

Thanks once again. Hope your youngest feels better soon Oracle-that time of year again I guess!

Bambi-Yes, I have picked him up a couple of times since his teacher arranged it two weeks ago. I take him straight back again afterwards and it does seem to be reducing his anxiety-and he eats more! It would certainly be worth asking your DS if it is anxiety about using the toilet which is putting him off eating. It had never occured to me that my DS had made the connection between eating and sometimes needing to "go"straight afterwards!

I am glad I started this thread as it is clearly something that a lot of our children are going through and we need to find ways of helping them (and ourselves before we go mad!)

I will call ipsea - thanks for the information Atilla - I had a quick look at the website and they seem very determined and positive. The OT isn't in today so I have left a message for her and will chase up tomorrow.

so for your sons not eating because of anxiety about the toilet, Tiggiwinkle and Bambi06.