Have we done the right thing ?

[Jem]

Hi, this is my first post so I would like to tell you all about my family.My wife and I have 4 children, an 18 year old boy, studying at college, a 15 year old girl studying hard at grammer school,a 9 year old girl doing very well at the local junior school and our lovely, but very hard work, 12 year old boy who was diagnosed with AS when he was 10.He is a bright boy,who took the entrance exam for our local grammer school and was accepted. We always knew he was a bit different from the age of about 18 months, and for years we just thought he was a bit of a pain in the neck and would grow out of his strange behaviour until one day my wife trawled the internet for "child behaviour" after a particulaly bad morning.She found a website all about AS and he seem to tick all the right boxes.So a visit to our GP followed who said "I dont think so, but I will refer him anyway, to put your minds at rest". Sure enough, after several weeks of questions and tests etc he was diagnosed.What suprised me back then was the lack of follow on help or advice.It was like, "yes your son has AS, goodbye!" So we carried on the best we could,then puberty came and with it even more hard work for us trying to keep him on the right path.It has been a very hard few years for our our family, and this last week can only be described as hell.

One of the worst things about living with our son is the struggle with have getting him in to bed, and getting him out of it. My wife and I have been surviving on about 4 and a half hours sleep for as long as I can remember.Just recently, as I am self employed, I have been working six days and doing ten hour shifts including weekends, so I have been unable to have a bit of a lie in and it has started to wear me down.It was back to school this week and it has been very difficult to get him up and out of the house.We are very lucky as we live a two minute walk from his school, but he is always late. We were called in to his school on tuesday to have a "chat" about his behaviour and time keeping and we all promised to try harder, as you do. Then wednesday came, and the battle was even worse than normal to get him out of the door. He has been so bad this week, I havnt been to work since last sunday. After wednesday mornings struggle, I said to my wife that we needed some help and support, and I rang social services at about ten o clock to see if they could help. It was a phone call I will never forget.After about 5 mins, I burst in to tears like I hadnt done for about twenty years.Struggling to get out all the details the kind lady was asking.I am forty years old, and consider myself no push over, and there I was blubbering like a baby.

anyway, had a letter today and they are coming round next thursday for a chat. My question is, have we done the right thing, and what help and advice should we be asking for?

Thanks to anyone who read my post, and I hope it wasnt too boring. I'm just glad to get it of my chest. Thanks for "listening", regards, Jem.

[krystaltps]

Oh Jem, I think it's shocking that you have received no support or advice, because we all need it. I'm glad you've found the forum, we're a good bunch and there is always good advice to be found.

I certainly think you have done the right thing - I think it's time now to demand some support for yourselves and your boy. I'm surprised (not!) that the school haven't been more supportive... but have learned from experience that that's often the way it goes.

Your boy needs more support in school, as I suspect that's one of the reasons he is so reluctant to go... and SS will be able to tell you how to go about getting it.

Re the sleep thing - there are things you can do to try to help matters. Go to your GP and tell him/her the situation and how long it has been like that.

Like your boy, C didn't really do the sleep thing either. It was a mammoth task getting him into bed and keeping him there, then he was simply unable to get to sleep. After 3 hours sleep, the last thing he wanted to do was get up for school... and once he was there, he was so exausted his behaviour was atrocious.

Last year C was prescribed melatonin. Many children on the spectrum take it. I wont go on about it too much but suffice to say - it has changed our lives. Do a search for it on the forum search engine and you'll find out loads about it.

I'm sure others who have more experience with SS will post in the morning, so check back then.

Take care <'>

[Cat]

It depends on what help you actually feel you need. SS can ofer respite, but that can be very hard to come by. You can also apply for direct payments and if you are sucessful you are awarded money which you then spend on whatever it is that you think will make your life easier. That could be taking your son out somewhere while the rest of the family chills. You find the person whom you are happy with to take your son out and you pay them from your direct payments. Social Workers can also help the family with any problems they have in school sometimes.

 

If it's help with sleep then I do not know that SS can help you. Sleep problems are very common in children and adults with autism/AS. I should know I have two of them one aged 20 and one aged 10 both are currently wide awake. The 20 year old seldom sleeps before 5am. I never get to bed before 3am but I have got used to their sleep pattern. Often if children are stressed and unhappy then that affects their sleeping pattern. I am kind of concerned about your sons school and wonder if they are making any adjustments for the fact that your son now has a diagnosis of autism. It's all very well and good calling you in and ticking you off about his behaviour and time keeping but is it possible that the school are in part responsible for both? Does your son find the begining of the school day difficult? My son hated all of the kids squashed together and the noise they made. It was not something he could tolerate. Many children with autism go into school either 5 minutes early or five minutes later to avoid this. Your son has autism and can no longer be expected to act like everyone else and be treated as if he was not autistic he is autistic. Are you promising something to the school that your son can not deliver. I do not know as you have not said how the school are doing meeting the needs of your son. I used to have to drag my son bodily down the stairs and eject him from the house. Not nice.

 

Puberty can be blooming hard work again I know that for sure. Can I ask how well your son understands himself? Has anyone sat with him and explained his condition? Does he want to know? Our eldest was 13 when he was diagnosied and we went through four years of a living hell. However the more he learnt about himself the better it got. My son needed space and lots of it while he went through the teens years, and buckets loads of tolerance and understanding not always easy to find when you are at the point of pulling your hair out by the roots.

 

This forum is a very good place to ask your questions and gain some understanding if that is what you are looking for. There are some really good people here whom I am sure will be more than willing to talk to you.

 

Cat

Edited January 11, 2008 by Cat

[Enid]

Hi

 

Am also new but with a similar story, I have 4 children and a soon to be 12yr old who was diagnosed at 10 with adhd asd (see concerta) after a nitemare when he turned violent towards us for 1st time I also rang ss who offered respite in the short term and are now having a big meeting about it which is pretty scary and I almost wish I hadnt rang, but like you I was desparate and cried on the phone and also the meeting which surprised me.

 

Good luck and will keep you posted on what happens

[Nic m]

Hi Jem there is both good and bad stories about social services, the only advice i would give you is have a think about what supports you could do with.

It would be worth seeing if there is a local carers support group, ss should be able to point you in the right direction for that, and things like checking your getting everything you are entitled to with benefits.Try writing down any questions you have and perhaps ask ss to send you a letter saying what they are coming out to do, you should be able to arrange to meet them anywhere if you do not want them in your house just now.

You may not wish to speak openly if your children could be present or are worried about interuptions.

Good luck, i hope everything goes ok

Nic

[barefoot wend]

Gosh! Had to reply as your experience is not far removed from ours a few years back.

 

We have a 17 year old girl at grammar, a 16 year old boy with AS who used to be at grammar, a 14 year old boy at grammar and a 13 year old boy at different grammar.

 

Our AS son passed 11+ with flying colours, went to grammar where they were all excited about having such a bright lad. Initially he did really, really well but gradually he deteriorated until he could no longer cope and we had to withdraw him at the end of Year 8 even after receiving a statement and the school's willingness to help.

 

What went wrong? He was unable to cope with the enormous changes between primary and secondary level and the expectation that he learn to be more independent. He also began puberty with all the difficulties that entails with regard to social interaction, peer pressure,etc.

 

He'd never been a good sleeper but this worsened too - I do think his sleep pattern is just different - although Melatonin has helped.

 

I agree with Cat that you need to have a straight talk with school about the difficultes you are experiencing because leaving the onus on you to get him to school on time will probably make things very difficult for you and is unlikely to solve the problem.

 

I would also go back to your GP and explain that your son's condition is deteriorating and ask to go back to CAMHS for advice and possible help - if this is difficult could you consider getting a private consultation with a specialist ?

 

Keep us posted - and welcome to the forum!

 

Barefoot

[Karen A]

Hi Jem and Enid.Welcome to the Forum. <'>

Jem.It is very sressful when you are not getting enough sleep.It is difficult to say how much help you may be offered by Social Services as the amount of support does tend to vary depending on where you live.Having read through your post I think that your son may be quite like my son Ben who is 9.He had DCD with Social Communication Difficulties [A long way of saying some AS but not clear enough for clear AS Diagnosis].Ben is also very bright and it was not until he was 7 that anyone thought he was anything but bright with a bit of an atitude problem

It appears from what you have said that you have two main difficulties sleeping and the impact that lack of sleep has on the rest of the family and lack of awareness in school.

The difficulties with sleeping could be related to anxiety.However I also have an [NT] son age 12.We have noticed that he is now sleeping in at the weekends when he can.So it may be that your DS needs more sleep than he did and so is not wanting to get up in the morning.

Regarding the difficulties your DS is having in school I have a few questions as it is difficult to offer any helpful advice without a bit more information.

Is the grammar school private or a state school ? Has your DS ever had any support in school for SEN before ? If the school is private do they have a policy and provision for SEN ? Did your DS just start Grammar school in September ?

Sorry to ask lots of questions.The reason I am asking is that the amount of support you are likely to be offered by both school and Social Services will depend very much on what they think your DS and your needs are.We were able to obtain a Statement of SEN and support for Ben however it is much more difficult to obtain input if a child is bright and above average in academic subjects.We would not qualify for any support from Social Services.

I may sound less optimistic than some of the previous people that have posted in terms of the suggestions for support you may qualify for from Social Services.However realisticaly whilst some Forum users have obtained respite or direct payments to fund respite it is usually in cases where children have significant learning difficulties or ASD.

 

Another wat to access support may be to speak to your GP and ask for a referal to Camhs or the Child Development Team.Camhs may well be able to provide some input regarding the sleep difficulties.A Specialist Dr [Psychiatrist or Paediatrician] would need to make a decision regarding prescribing melatonin.So it may be woth talking to your GP to request a referal rather than waiting for the appointment with the person from social services.

There are lots of knowledgable helpful people on the Forum so do ask if you have any questions.There is also lots of information in the Education part of the Forum if you want to read around a bit.Karen.

[JsMum]

<'> welcome and I hope that you find that this is a supportive place to begin with.

 

I would say that you have done the right thing, defeo, its clear that things can not continue with the way things are and it is effecting the whole family, so asking for support is nothing at all to wonder if you have done the right thing, continuing could have far more consequences, my only dred is that you are turned down for support in the fact they say your son doesnt have a learning disability, if after your visit and your not given support defo write to the social services and complain and express very clearly the impact that raising a child with ASDs is having on your family and not to forget how difficult it will be for your son.

 

Its clear that in school that he is being given too many expectations, and the pressure is evident in the routines of morning reluctance and evening defiance. I know we are in the same situation but J is totally refusing to even go into school, his behaviour is disruptive and challenging and he gets very angry at any mention of school issues, he has a lot anxieties relating to school mostly related to the actual social and enviromental as well as some learning difficulties too.

 

I would say try all you can get some help after complaining I now have support everyday monday to friday in the evening and I am hoping we can have some support in the morning for school but at the moment we cant even push him out the door.

 

Are you attending any parent support groups for AS and carers are also a great place to get support, mencap also can help you get what your son deserves, a family that can help meet his needs, for that happen the family need support.

 

Do not give up, keep fighting, and you have done the right thing, you are a fab man and a true one at that.

 

 

JsMum

[Jem]

Hi, just popped in quick just to say I will try and post later when I have more time.I would like to say a big thank you to all of you that have either read or replied to my post, I have got lots of information during the afternoon to think about.I must say I am absolutely overwhelmed by all your help. I am so glad to have stumbled across this forum.Many many thanks, and hope to speak again later. Jem.

[hev]

hello jem and welcome to the forum <'>

[pearl]

Welcome to the forum Jem & Enid <'>

[Lucas]

Jem, it's all too common that no help whatsoever will come after diagnosis unless it's fought for.

 

Social services will want to help, but there are multiple factors impairing them, budget being just one. Individual people will be wanting you to get the help while the organisation itself will be quite resistent. It's the same with Local Education Authorities. Has your son been statemented? It's a legal obligation which forces LEAs to meet requirements for children and young adults with special needs(though they will do absolutely anything to avoid it and will try to water down the requirements of a statement significantly).

 

People here can give suggestions that can help you with your son; common occurrences tend to have just a few common causes. Getting out of bed is a problem for me because I have severe sensory issues, especially with textile senses and temperature. I pull back a duvet cover and it's like falling into freezing water. So I have to work my way out of bed. Getting to sleep is a problem for me because everything is so noisy and chaotic during the day. The early hours of the morning are the only absolutely peace I get, discouraging me from sleeping through them. Your son's issues won't neccessarily be the same, but they could be similiar.

 

Also, don't be fobbed off by snooty professionals blocking your way by saying 'AS is only mild Autism' or 'it's only mild AS'. There is nothing mild about Asperger's, you can either be Autistic or you aren't, you fit the criteria for a diagnosis or you don't. Though halfways may exist in the form of 'broder spectrum penotypes' they are currently not recognised by any credible measure. The difference between Autism and Aspergers is still under heated dispute, but no one can argue that they are so similiar that the way individual needs are assessed should be exactly the same regardless of actual diagnosis.

[Caffeine Junkie]

If you want help you have to ask for it, and it is difficult to get. You may be able to get overnight residential once or twice a month, due to the lack of sleep. We should start this in a couple of months, and my son is only 6. You should also be able to get some sessional support, where a carer will take your child out, to give the rest of you a rest.

 

The amount of support you need will probably not be forth coming immediately, and regular phone calls to say how your family is not coping may be needed in order to increase the support package.

[Suze]

<'> , just wanted to say hi and send a hug your way, my son,s the same age and attends a high school resourced ASD unit.We have problems with sleep and melatonihn has helped enormously.You,ll find his sleep probs exacerbated at the mo due to puberty.I,d go see your gp about sleep probs mention melatonin see if he thinks it might help.I,d also request a referral to camhs urgently to get some access to services for you r family and your son.You may find them more help than SS.Also meet with school and explain all the probs etcthey should be able to access outside help to come in and give them stratergies to help your son cope at school.

Also my son has "issues" with getting up in the mornings, using an alarm has helped big time as it avoids any confrontation between us as I don,t have to enter his room.best wishes suzex

[Bagpuss]

Hi Jem, welcome to the forum <'>

[Jem]

Thanks to all of you who have offered advice , and to those who have welcomed me to this forum. I have been overwhelmed by all your support and really do feel that Me and my family are now starting to claw our way out of a black hole. I have read through the posts and have tried to digest all of your advice.

I am not sure if my son has a statement of SEN.I thought he did have something posted to us shortly after diagnoses, but my wife is not so sure.He was refered to the SEN dept of his school shortly before starting there. I have since found out that his school (which is a state school) have to accept 5 SEN pupils each year, so maybe he has.Who should I ask to confirm this?

I have to admit, I did not know what CAMHS was, so I have been looking up there details for my area.I think they are the best people to contact next, and will ask SS about this when they visit.

I had never heard of melatonin before and will be asking our GP about this soon.I will be finding out about any local AS support groups too

I think since his diagnoses My wife and I have had our heads in the sand a little bit and now its time to dig them out.We have four kids and life just seems to flash before your eyes as we are all so busy, and you just seemed to get through each day one at a time. I feel full of guilt as we never seem to have the time very often for days out and stuff like that. I have made a concious decision to get my son all the help and support he needs.I have also decided that I will no longer work six days a week. As from next week I am having sundays and mondays off so as the weather gets better, we can have more family days out on sundays, and my wife and I can have mondays to ourselves to do what needs doing

Once again thanks for all your help, and I will keep you posted after our meeting with SS on Thursday.

[Kathryn]

Hi Jem, and welcome.

 

It takes a long time to pick your way through the complex SEN maze so don't worry: many of us have had to do this. I found it hard enough with just two children!

 

From what you say, it sounds unlikely that your son has a Statement, or you would know about it, and should have a copy of it. It involves an in depth assessment from various professionals, and the local authority are obliged to ask for your written input as parents. You would also have been required to attend annual reviews to discuss your son's progress.

 

Ask the special needs coordinator (SENCO) at the school who will be able to confirm the situation.

 

The link below will take you to some useful information sheets on getting extra help in school, and the statementing process. Please ask if anything isn't clear and don't forget the forum "jargon buster" - the link is at the top of this page, on the right.

 

http://www.asd-forum.org.uk/forum/index.php?showtopic=690

 

K x

[Cat]

From what you have said it sounds very unlikely that your son has a statement. I even wonder if he is on school action or school action plus. He should at the very least be on school action plus. This would mean that the school has access to all of the professionals which they will need to tap into to help your son. I would be asking if your LA has an autism outreach team and if the school have made use of them. I would also be asking if your son has an IEP (Individual Education Plan) You should know if he has one of these as you should be included in the writing of this plan, as should your son because he is old enogh to have a say in his own education.

 

It sounds as if the school have sat back and done diddly squat since finding out the diagnosis and I find this appalling. The teenage years can be the hardest for children with autism. They need lots of understanding. encouragement and support. Many have a very low self esteem no matter how cleaver they are and simply stop trying.

 

Without trying to be rude I would read up on the condition yourselves because you can only help and support what you understand. A really good book to read would be 'The Complete Guide to Aspergers Syndrome' by Tony Attwood who many consider to be the leading light on AS.

 

Also if you do make and apointment with your CAMHS Team PLEASE make sure that the team you are referred to has a specialism in autism. If you do not make sure of this you may see a team with little if any understanding of the condition.

 

Cat

[Karen A]

Also if you do make and apointment with your CAMHS Team PLEASE make sure that the team you are referred to has a specialism in autism. If you do not make sure of this you may see a team with little if any understanding of the condition.

 

Cat

 

Cat.I am aware that some Camhs teams may have more understanding of AS than others.However any referal from a GP is in the first instance seen by a child psychiatrist..who is a Dr with several years specialist further training.The psychiatrist will not have little or no understanding of autism.

I also think it is worth pointing out that for children who have had little previous imput from CDT Camhs may be the only option for input.In our area all of the input for older children who have not had CDT input is provided by a specialist within Camhs.Karen.

[Cat]

Cat.I am aware that some Camhs teams may have more understanding of AS than others.However any referal from a GP is in the first instance seen by a child psychiatrist..who is a Dr with several years specialist further training.The psychiatrist will not have little or no understanding of autism.

I also think it is worth pointing out that for children who have had little previous imput from CDT Camhs may be the only option for input.In our area all of the input for older children who have not had CDT input is provided by a specialist within Camhs.Karen.

 

I am sorry Karen but our GP referal left us seeing a child psychiatrist who knew nothing at all about autism and who left us on suicide watch. Not every team does have specific autism training and I am not just talking about in my area. I have helped too many parents nationally now not to know that CAMHS like everything else is very much a postcode lottery. It is no good just accepting that the people who you see will know about ASD it is not always the case. I could give three examples right now of parents who are not seeing the right people in CAMHS.

 

Cat

[Flora]

Many CAMHS consultants don't have much understanding (if any) of the huge spectrum of autism.

 

When my boys were referred for their dx we lived in Newcastle. The CAMHS team we went to were absolutely fantastic and because the centre was attached to an autism unit at a special school, then their knowledge of ASD's accross the spectrum was excellent. We have since moved down South and my experience of CAMHS is very very different. The two consultants we have been most involved with have very little understanding of ASD. When they need specific advice they refer to an autism expert based at Oxford university. It makes accessing any services very difficult. They do not make diagnosis without input from a professor from the university, and their involvement is nothing more than 'treating the problem'. ie, they can help to access OT for CBT, (which is virtually non-existent), and they can treat mental health problems. I reckon my son's latest consultant has learnt more about AS from me and Bill than she has in her professional career! By her own admission she's not 'an autism expert'.

 

flora

[Cat]

The team in Newcastle were the team that we were eventually seen by with our son. And what a difference ten miles made

 

We now has a retainer with Newcastle and access their expertise in much the same way that your team do Flora. They came into Sunderland during the summer and did some mass diagnosing sessions. I am about to pass a name on to our CAMHS team in the hope that they can help a parent in our group who has a child with multi-sensory issues. The parent is being told that there is no one in our region - I just found out that they are wrong thanks to this very forum.

 

Cat

[Karen A]

Hi Cat.

I think it is important to emphasise again that I am not saying that all members of Camhs teams would have specialist knowledge and experience of ASD and they may not all be autism experts.However a basic knowledge and background in autism is part of the training provided for child psychiatrists .

Incidently there is no reason in my mind why all children with ASD should be put in one category and only supported by specific experts.Our family are currently recieving a package of excellent support which is being coordinated by another professional within Camhs rather than the ASD specialist.

I very strongly believe that what is most impotant is that any individual is provided with appropriate help and support.People on the Foum here have found that various strategies provided by various professionals may be helpful for them.I do not think that support provided by Camhs is any different.

I would like to add that Ben is making excellent progress in school and at home with support that would not have been offered if an ASD specialist had offered the sort of support routinely offered by specialists in ASD.

I think the issue is one of providing appropriate support at an adequate level.Many parents and individuals here appear to recieve very little profesional support at all from anyone.Karen.

[Cat]

It was the guy with the 'basic' knowledge that caused us so many problems that almost cost me my family. I now really do believe that a little knowledge can be a dangerous thing. My point is that it is important that families are aware that not everyone who they believe will be able to help them will be able to do so and they do have the right to ask questions about who they will be seeing whoever they are.

 

Cat

[Karen A]

Hi.I think it is worth explaining that the most probable route of referal to Camhs is likely to be via a GP.A GP makes a referal to a professional within Camhs -usually the child psychiatrist who will assess who it is most appropriate to do an initial consultation.

In this case an insistance that Jem's son is seen by an ASD specialist is likely to lead to a longer wait for an assessment.If a psychiatrists decides that specialist ASD input is needed after an initial appointment then they can always refer on.However it is for the psychiatrist to decide.

 

What is more although Jem's son has an AS Diagnosis it should not be pressumed that current difficulties are related to AS and can only be treated by an ASD specialist- that is for the GP or psychiatrist to decide.After all if a patient is admited to hospital with a broken leg it would not be a good idea for them to insist that they be seen by ENT specialist because they happen to also be deaf.Karen.

[Karen A]

It was the guy with the 'basic' knowledge that caused us so many problems that almost cost me my family. I now really do believe that a little knowledge can be a dangerous thing. My point is that it is important that families are aware that not everyone who they believe will be able to help them will be able to do so and they do have the right to ask questions about who they will be seeing whoever they are.

 

Cat

 

Hi Catt.I do understand very well the anger you feel towards the professional that almost cost you your family.

However I wonder whether the issue is about knowledge about ASD.

After all the issues you describe relating to being put on suicide watch relate to tenage mental health rather than just ASD.

Karen.

[Cat]

How we were treated was not unusual and certainly not an isolated case. You may find that very hard to believe but believe me I know that I am correct here. Parents should never just assume that the professionals who are dealing with them will know best because sometimes they do not.

 

I do not wish to post details of what happened to us here but it is well documented and accepted that our sons mental health issues were as a result of the wrong input from CAMHS. You will have to take my word for this but I am not in the business of making things up.

 

Apologies to Jem for high jacking your thread. I will not post again on this thread there are people here who know more than I do about this.

 

Cat