Residential Mental Health Assessment

[JeanneA]

Hi, my son Glen as you know is autistic and I have been informed from the clinical psychologist that due to my son's behaviour isssues over the years he needs to go to a residential place for a mental health assessment. Glen is 15 now and his main problems are school related which is why his behaviour deteriates, he gets aggressive, wets himself, strips off etc. Rather than advice or work with the School etc the psychologist is saying Glen needs to go away but I do not want him to. Glen is a child who needs routine, will be extremely anxious somewhere that he's never been especially surrounded by strangers. I don't think its a good idea at his age for him to be taken away from his home for a long time and to take him away from all the things he enjoys. All the professionals including Glen's social worker are for it. Please tell me what you think and also I presume that the parents do have the final say in something like this and we can't be forced into it?

Edited October 17, 2009 by JeanneA

[Sally44]

I really don't know enough about this area, but i'm sure others will post.

I presume that the clinical psychologist has come to this decision because they feel behaviours are due to mental health rather than ASD??? Do all those involved with your son have experience and expertise in ASDs? Because I am sure some behaviours could easily be considered due to mental health issues when they might have a basis in the ASD diagnosis. But having said that those with an ASD can also have mental health issues.

But I think you are rightly concerned about how all these changes are going to affect him and what the purpose of any stay in hospital is aiming for or going to achieve. Why the need for an assessment in hospital - have you discussed her reasons for this. Maybe she feels she wants to see how he performs out of the school environment. However is she considering that he may well perform very badly in a strange environment with unknown adults. And even if they assess in hospital and he performs well that still means those skills have to be transferred into the school environment which means input into school in terms of hours of support and staffing arrangements.

I have always found MIND to be a good place to get mental health advice. But I would also speak with the NAS about what is being suggested.

Why do they want him to go into hospital.

Do other professionals know of this suggested course of action and are in agreement, even ones that you feel have a good understanding of autism and how it affects your child?

I don't know if you can refuse. I would think you could because this is about an assessment and isn't anything to do with being sectioned.

But I would speak with the clinical psychologist again to get a very clear idea of what they are suggesting. A written letter to them asking what they are suggesting and why and what the outcome of any assessment would be etc should get you some answers. You could also raise your concerns about this assessment and how your son does not respond well to changes in routine, environments, predictable outcomes, strangers, expectations, performing assessments etc and ask her how his diagnosis and how he may respond to these assessments may well give unclear or even false results.

But also speak with MIND and the NAS.

 

[JeanneA]

Hi Sally thanks very much for your comments, really appreciate what you have said. My husband and I are writing a letter this weekend to the clinical psychologist. The psychologist does think that Glen's behaviour problems are mental health related as apposed to ASD, we are not convinced however. I do not want my son to be sent away for a long time I have extremely concerned about all of this.

[lisac]

JeanneA, I have never heard of this before, sending a child away to a residential place for a mental health assessment. At the end of the day it is down to you and you can say No . Dont be bullied by the professionals if you feel it is wrong. My son is 22 and all of his behaviour problems were school related, he would then bring all his frustrations home with him. I had professionals saying they thought he had mental health problems but my instinct always told me it was due to his autism and came down to how he was being handled ..People dealing with asd children, in my experience, often get it wrong.. At age 18 when he went over to the Adult team , it was like a breathe of fresh air, and in my experience they are a 100 times better than any childrens service, x

 

[JeanneA]

Thanks Lisa it has made me feel so much better reading your comments. Like you my son's problems are School related but the professionals don't seem to agree with us. I do feel very bullied by the clinical psychologist I haven't liked her since the first time I saw her, she is very forceful.

[Enid]

Hi, my son is nearly 14, and I believe he has mental health problems, as well as ASD/ADHD, he went daily for an assessment at age 11 when he received his ASD diagnosis, as his behaviour became more bizarre and out of control, I begged for him to go somewhere for a residential assessment but was told there wasnt anywhere, one dreadful night when 3 burly policeman couldnt control him, he went to an assessment centre as an emercency placement, it was whilst there his "other" behaviours were observed and others finally saw how he could change in the blink of an eye, incidently prior to this his ASD behaviours became really obvious and he seemed to become "more autisic". sorry, this isnt very clear! running out of time, but I would have thought the choice was yours, if there is a need to obseve him, perhaps they could do home visits or he could go daily? Enid

[lisac]

Thanks Lisa it has made me feel so much better reading your comments. Like you my son's problems are School related but the professionals don't seem to agree with us. I do feel very bullied by the clinical psychologist I haven't liked her since the first time I saw her, she is very forceful.

 

JeanneA, Ditto! I really could have written that !! I know how you feel and it really isn't nice .

In our case, I sensed she really didnt like me either because I challenged her views, and she didnt like/wasnt used to it.

Yet other parents 'raved' about her . Bizarre . I even brought along an advocate from a local carers charity to sit in on meetings with us and his opinion was, that she was robotoc, almost like reading from a text book, and it certainly wasn't me that had issues. You have the final say . No one else .

You can only pray that she soon leaves her job, or in three years your son will move over to adult services, who in my experience are much more 'human' understanding and supportive. It could'nt come quickly enough for us , x

[JsMum]

 

 

Firstly they can not admit him into a Mental Health Hospital without your consent, and you can request a hospital that has specialism in Autism so they do not give him the wrong diagnosis.

 

Secondly is he in a special school if not and he is in mainstream does he have a statement full time, there may be other areas that need assessing as well as his mental health, if he is in a special school what kind of special school? and does he have respite there or access to after school activities.

 

It may be a good idea to have Social Services do a children in need assessment as they may need to look at all areas of his life, especially as he will be transitioning to adult services soon and a mental health unit for adults may place your son at risk due to his Autism and social vunrability.

 

I absaloutly recommend as everyone here is sick of me saying them but they are just fab is CONTACT A FAMILY,

http://www.cafamily.org.uk/families/index.html they have booklets on services and rights and information on different situations and if they dont know the answer they know someone who will or may and refer you on.

 

Obvously NAS too.http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=128&a=3346

 

http://news.bbc.co.uk/1/hi/health/8305692.stm

 

And YOUNGMINDS http://www.youngminds.org.uk/parents as they have more experience with mental health assessment and children.

 

I would ring around these people to see where it is best to get his needs met but no one can force you to do anything you dont want to happen.

 

JsMumxxxx

 

 

 

 

[JeanneA]

Hi thanks for your comments. Glen is in a special school, he has got a statement has had since he was 7. The school just cannot cope with him and would go along with anything if it means he wouldn't be there for a while, thats how I feel. The so called professionals prefer to put it down to the home and not the school suggesting that perhaps Glen is not happy with myself and his step-dad, which is completely untrue. Glen's problems are and always have been school related but no-one it seems will admit this.

I will look into contacting the people you have suggested, thank you for that much appreciated.

[lisac]

JeanneA, what a load of Tosh. There is so much I could write, but I wont as I am going to having a drink

What you say sounds almost identical to what happened with us, when my son was of a similar age. Stick to your guns, you know the truth, x

[Karen A]

Hi.If your son is 15 then he should be admitted to a CAMHS unit rather than adult provision.Please do insist that your son is admitted too appropriate provision which would certainly not be an adult ward..

Many people here including our family have support from CAMHS.CAMHS is the mental health provision for children and teenagers.In my area it is part of the Mental Health Trust.

It is unusual for admission to be suggested.Admission to CAMHS units is usually only suggested where professionals think intensive input is required.

Admission would be agreed with you and you could decline the offer if you think it is not in your child's best interest.

The problem now is that there is no longer any provision within the NHS for assessment for people with learning difficulties.

If it is considered that the situation is such that residential assessment is needed then there are I think few options available.

Residential specialist provision is an option in Specialist Educational Provision if the LA agree to fund it via a Statement.Several Forum users have children in this type of provision.However it is not as far as I know an option for assessment or where there is an urgent need.

In this sort of situation the only other option that might be sugggested would be Specialist Foster Care with Specialist Educational Provision.

There simply are no longer any beds for Assessment for teenagers or children with ASD or learning difficulties.It is the result of changes in the NHS and Social Care in the 1970s.

I can honestly say that the CAMHS support we have recieved has been excellent.There are some excellent professionals around.A CAMHS psychiatrist would probably be the most helpful professional if your son is exhibiting challenging behaviour.I cannot think of any other professional within the NHS who is likely to be more appropriate.

 

I was just wondering where your son is educated currently.Is he in Specialist Educatuional Provision already ?

I hope the other person does not mind me saying if so I am sorry.

There is another Forum user that I am aware of who has a daughter who has been admitted for mental health input.However I think she had specific mental health needs as well as ASD.

 

Do you have any input from CAMHS ?

If so it would certainly be worth contacting the CAMHS professional that is involved.

I would honestly be amazed if a psychologist had the autority to arrange residential assessment in an NHS bed

It just does not sound right to me.

 

I am almost certain that the only person who could authorise admission to a CAMHS bed would be a consultant psychiatrist.The provision is extremely specialist and is an extremely expensive option.I cannot imagine a consultant being in agreement without knowing the patient and having tried all other options.

Could it be that the psycvhologist is thinking about Specialist Residential Educational Provision ?

As I have already said this is an option if the LA agree that there is sufficient need and they have no other options.There are some excellent Residentail Specialist Schools which cater for teenagers with challenging behaviour and ASD.

 

Karen.

[Karen A]

Hi thanks for your comments. Glen is in a special school, he has got a statement has had since he was 7. The school just cannot cope with him and would go along with anything if it means he wouldn't be there for a while, thats how I feel. The so called professionals prefer to put it down to the home and not the school suggesting that perhaps Glen is not happy with myself and his step-dad, which is completely untrue. Glen's problems are and always have been school related but no-one it seems will admit this.

I will look into contacting the people you have suggested, thank you for that much appreciated.

 

Hi.Sorry I cross posted.

On the basis of what you have just said I would be amazed if the school could arrange admission to a CAMHS unit.

They may like to think they could or may wish you would find an alternative.

However I could not imagine any CAMHS consultant arranging admission to a CAMHS bed just because the school would like a break.

CAMHS beds are extremely expensive and over subscribed.They would be a frankly bizarre way to provide respite for school.

If you were desperate and in agreement that there were no other options perhaps the consultant might agree.

I would be astonished if CAMHS agreed with the school and suggested admission if it is not what you want.

I am very rarely so outspoken.However I cannot believe that school have any authority to suggest inpatient mental health assessment.I honestly wondering if someone is hoping you will move your son and does not mind where.

Edited to add young minds are the experts.If needed they can arrange for a CAMHS professional to call you back.I found them excellent.

Edited October 17, 2009 by Karen A

[anntham]

Hi

 

I am not sure if this will help - but my daughter is 14 and has ASD and significant challenging behaviours. She is currently an inpatient on a specialist childrens unit which specialises in mental health / autism / challenging behaviours etc.

 

This is a very specialist in patient unit and is proving to be a very useful admission. It was and still is exceptionally difficult to have her away from home, but she is responding well to their interventions and the assessment is very comprehensive.

 

I am aware that there are very few units like this one in the country - but they do take referrals from anywhere in the uk.

 

I would say don't be bullied into anything that you don't want to happen, your gut feeling is usually right- but if you do agree make sure it is the right place

 

I am thinking of you all

 

Best Wishes

 

Ann x

 

 

[JeanneA]

Hi just to update you folks, I've been ringing around trying to get advice and to see where I stand. The NAS told me that the psychologist would have to get my permission before Glen could be admitted to a mental health assessment hospital. That has helped me, they are also going to send me some info via email.

[JsMum]

Hi just to update you folks, I've been ringing around trying to get advice and to see where I stand. The NAS told me that the psychologist would have to get my permission before Glen could be admitted to a mental health assessment hospital. That has helped me, they are also going to send me some info via email.

 

 

Ive been thinking about you, wondering how your getting on, really pleased that you have been intouch with NAS and hopefully with the further information you will have a better understanding of your sons rights.

 

I hope that things get sorted out soonxxxx

 

JsMumxxx

 

[JeanneA]

Hi J's Mum thanks for your message. I to hope this gets finally sorted out very soon. I am supposed to be hearing from my social worker any day about coming to see me to have a chat about the whole situation. I was hoping to hear from her today but no, so I may ring her myself tomorrow.

[JsMum]

Hi J's Mum thanks for your message. I to hope this gets finally sorted out very soon. I am supposed to be hearing from my social worker any day about coming to see me to have a chat about the whole situation. I was hoping to hear from her today but no, so I may ring her myself tomorrow.

 

 

could you email her and that way you have evidence of the contact, and that way you have it in writing the date of her appiontment, keep a detailed dairy of the people you ring, there names, department/organisation and date and a breif note of action or what was organised, including NAS and other organisations so you can keep track of who you talk to and when.

 

JsMumxxx

 

[JeanneA]

Hi guys thought I would give you an update on the situation. Glen's social worker came to see me yesterday as the so called professionals had a meeting on Monday. Anyway I cannot be forced into the residential hospital, I already knew this as I have been in contact thanks to your guys on here with several places so I do know my rights. However the social worker thinks that it would be a good idea if hubby Carl and I were to go and visit this mental health hospital to see what it is like for ourselves before we definately decide that it is not what we want. The hospital is a long way away for us, as well as Glen we do have ourselves to think of (without sounding selfish), it would be difficult to commute regularly backwards and forwards due to other commitments. Also, she did say obviously there are no guarantees, Glen may or may not benefit from this place. It does not specialise in autism which is another concern for us. I think it is obvious the the psychologist is supporting the school by what they are suggesting. Carl and I intend to stand firm, we will not be pushed into something that we are not convinced will be of any help to Glen in the long term. The social worker said that the psychologist would like to see us to have a chat about it and she would give us more detail into what the whole placement would consist of.

[JsMum]

Hi guys thought I would give you an update on the situation. Glen's social worker came to see me yesterday as the so called professionals had a meeting on Monday. Anyway I cannot be forced into the residential hospital, I already knew this as I have been in contact thanks to your guys on here with several places so I do know my rights. However the social worker thinks that it would be a good idea if hubby Carl and I were to go and visit this mental health hospital to see what it is like for ourselves before we definately decide that it is not what we want. The hospital is a long way away for us, as well as Glen we do have ourselves to think of (without sounding selfish), it would be difficult to commute regularly backwards and forwards due to other commitments. Also, she did say obviously there are no guarantees, Glen may or may not benefit from this place. It does not specialise in autism which is another concern for us. I think it is obvious the the psychologist is supporting the school by what they are suggesting. Carl and I intend to stand firm, we will not be pushed into something that we are not convinced will be of any help to Glen in the long term. The social worker said that the psychologist would like to see us to have a chat about it and she would give us more detail into what the whole placement would consist of.

 

 

 

I would personally write a detailed letter to your social worker and point down why you are not agreeing to the proposed visit.

 

Also if you did decide to visit, you may get expensices paid, even accomadation and travel if you needed to stay more locally to the hospital.

 

I personally would visit, that way you have further evidence to why you feel it is inapropriate for your son.

 

Take a camera and take any photos that add to the evidence too.

 

I feel it helps to show the system that you have tried to work together but that doesnt mean you have to agree to everything they say you must do, but just back it up.

 

Also if any of the contacts you have contacted if anyone can assist you on the visit as an Avocate for your son so that they have other proffessional resports too, this really can add weight to your case.

 

I really recommend still to get legal help and support.

 

JsMumxxxx

 

 

 

[JeanneA]

Hi J's Mum thanks for your comments I will take them on board I had already written to the social worker saying why we against the idea. I need to talk to the psychologist though and like you say probably go and visit the hospital but I don't think my mind will change.

[Sally44]

Also when you visit the hospital ask them exactly what experience/expertise or training they have regarding autistic spectrum disorders (in terms of years of experience and numbers of patients and hours of training received by staff or specialist staff at that hospital), and ask them how they would determine whether the behaviours are due to an ASD or other mental health issues, especially as some aspects of behaviour can at times be challenging and seem bizzare to us.

 

Also list down exactly what the 'behaviours' are that school/professionals are struggling with. You can then speak with the NAS educational helpline. You do need to leave your name and details for someone to phone you back. But it might shed some light on other things that could be done. For example lack of support or work being presented in a way that he does not understand, or environmental or sensory issues can send our children into such an anxious state or leave them making angry or tearful outbursts or even attacking staff. But the root cause of the behaviours needs to be found to see if and what can be done. A different placement might work. Or indeed there is also the possibility that there are also mental health issues involved. But it does surely become harder to come to any decision or diagnosis if professionals are not suitably qualified or experienced regarding ASDs.

 

Can you give us some idea of what is causing school such concerns as other parents may have similar issues with their children.

[Karen A]

Also when you visit the hospital ask them exactly what experience/expertise or training they have regarding autistic spectrum disorders (in terms of years of experience and numbers of patients and hours of training received by staff or specialist staff at that hospital), and ask them how they would determine whether the behaviours are due to an ASD or other mental health issues, especially as some aspects of behaviour can at times be challenging and seem bizzare to us.

 

Also list down exactly what the 'behaviours' are that school/professionals are struggling with. You can then speak with the NAS educational helpline. You do need to leave your name and details for someone to phone you back. But it might shed some light on other things that could be done. For example lack of support or work being presented in a way that he does not understand, or environmental or sensory issues can send our children into such an anxious state or leave them making angry or tearful outbursts or even attacking staff. But the root cause of the behaviours needs to be found to see if and what can be done. A different placement might work. Or indeed there is also the possibility that there are also mental health issues involved. But it does surely become harder to come to any decision or diagnosis if professionals are not suitably qualified or experienced regarding ASDs.

 

Can you give us some idea of what is causing school such concerns as other parents may have similar issues with their children.

 

Hi.If the unit is a general mental health unit even if it is a CAMHS unit the answer to the question about training or experience in ASD is almost certain to be very little if any.

ASD would not come within the training of RGN nurses [genaral nurses] or Mental Health Nuses.

Most nurses would be fortunate if they have had a half days training in disability or learning disabilities within the whole of their training.

Nurses are general professionals just like teachers.It is not realistic to expect specialist training.

I once talked to a Social Worker who worked with a Specialist Team within CAHMS supporting teenagers with major mental health needs.She said she had never come across a client with ASD.

CAMHS psychiatrists and specialist staff working with children with ASD will obviously have extensive training.However ASD is not a mental health condition.So it is not realistic to expect specialist training in ASD.However that should not be a reason not to accept admission if the individual has Mental Health Difficulties or possible mental health difficulties that require assessment.

After all when Ben had a broken arm I did not expect the staff to have training in ASD before they treated him even if ASD was a factor in how he came to break it.

I know it would be helpful if staff had more knowledge.However I am sure that every parent of a child with a disability or health need wishes that everyone had specialist training in the specific condition that effects them.

As I said before Specialist Provision within the NHS for individuals with disabilities no longer exists.There used to be a course in Mental Handicap nursing.However at some point in about 1970s someone decided that it was no longer needed.

As others and myself have said there are Specialist Private Mental Health providers that have provision for AS.There are is also Specialist Educational Provision.However they do not come within the NHS.I would be surprised if they could offer Mental Health Assessment.

An NHS Mental Health Unit would not be classed as provision under the SEN COP.

CAMHS inpatient units usually provide care for children and teeanagers who are very mentally unwell.They offer inpatient care only when it is absolutely necessary.

Karen.

 

 

[JeanneA]

Hi Sally, I know Glen's problems are and always have been school related. The school are saying that Glen's behaiour as in: wetting, pooing, exposing himself, stripping off, physically aggressive is all bizarre behaviour. However I know for a fact that autistic kids can behaviour in this way its their only way of trying to tell you somethings wrong. At the moment Glen seems to be in a more suitable class, but year after year they keep getting it wrong but instead of owning up to it they would rather blame the parents, the home etc, when I knew this simply isn't true.

[JeanneA]

Thanks for your comments Karen, I will let you know how things progress.

[Karen A]

Hi guys thought I would give you an update on the situation. Glen's social worker came to see me yesterday as the so called professionals had a meeting on Monday. Anyway I cannot be forced into the residential hospital, I already knew this as I have been in contact thanks to your guys on here with several places so I do know my rights. However the social worker thinks that it would be a good idea if hubby Carl and I were to go and visit this mental health hospital to see what it is like for ourselves before we definately decide that it is not what we want. The hospital is a long way away for us, as well as Glen we do have ourselves to think of (without sounding selfish), it would be difficult to commute regularly backwards and forwards due to other commitments. Also, she did say obviously there are no guarantees, Glen may or may not benefit from this place. It does not specialise in autism which is another concern for us. I think it is obvious the the psychologist is supporting the school by what they are suggesting. Carl and I intend to stand firm, we will not be pushed into something that we are not convinced will be of any help to Glen in the long term. The social worker said that the psychologist would like to see us to have a chat about it and she would give us more detail into what the whole placement would consist of.

 

Sorry.I missed this post when I posted and have just read your last one.

Reading both posts I am honestly left wondering what would be gained by admission to a mental health unit where staff have no speciaist training in ASD.

Even if the staff were able to do mental health assessments if the main concern is with education I cannot see how it would help.

What diagnosis does Glen have ?

Can Glen talk and communicate his needs ?

Ben has AS and so I am not talking from my own experience.

However a close friend has a son with ASD who is 11.He has many of the difficulties you describe.It is certainly recognised that they are related to ASD.

It might be worth contacting the NAS general helpline for some advice.

I am not an expert at all.However reading through your thread it sounds as though if school are not coping and they think an alternative environment might be more appropriate then perhaps a Specialist Placement for teenagers with ASD might be more appropriate.Staff in this sort of provision do have specialist training in ASD and it is understood that the difficulties you describe can be related to ASD or the result of anxiety related to ASD.

Even if staff at the Mental Health Unit were able to resolve some of the difficulties if they arise due to ASD if the school environment does not change then the same issues will arise on discharge.

If the Mental Health Unit is funded by the NHS then admission would probably be funded by the NHS.So it would not cost the LA anything.

However placement within a Specialist Independent Educational Setting would be expensive and would need to be funded by the LA in some form...either SS or Education but probably both.I wonder if this is a factor.

Although Mental Health Patients can exhibit the behaviours you describe the reasons for the behaviour and the treatment suggested would be very different than for an individual with ASD.

I am a member of an NHS foundation mental health trust and our family have recieved considerable support from CAMHS.So I am very much an advocate of those with Mental Health Needs.However it remains true that a lot of mental health treatment revolves around the use of medication.I am sure that there is a place for medication.However I would be concerned with the possible use of medication in order to treat difficulties Glen has which are actually related to difficulties communicating anxiety or the school environment.

I edited to add.I went on the NAS help 2 course last week on helping children and teenagers with AS manage anger.Although the issue of pysical agression was not covered the NAS are currently researching the subject with parents.It was obvious from the course participants alone that it is a major concern.

I also have a book ''Peolple with Autism behaving badly'' by John Clements that might be useful.

Edited October 23, 2009 by Karen A

[JeanneA]

Thanks very much Karen. Glen has ASD, he can talk but chooses not to most of the time. He has severe learning difficulties. I agree with you I don't think that sending a ASD young person to a mental health hospital is appropriate, which has been my argument. When Glen's behaviour is at its worst then the School cannot cope, and I think they are concerned that although Glen is fine at the moment what about if his behaviour deteriorates again. I do not appreciate being pushed into something that I am not happy with.

[lorryw]

Hi Jeanne,

Can I suggest you get in touch with the challenging behaviour foundation www.thecbf.org.uk. They have some excellent information and can provide help and support (also some excellent DVDs).

 

Loraine xxx

[Karen A]

Thanks very much Karen. Glen has ASD, he can talk but chooses not to most of the time. He has severe learning difficulties. I agree with you I don't think that sending a ASD young person to a mental health hospital is appropriate, which has been my argument. When Glen's behaviour is at its worst then the School cannot cope, and I think they are concerned that although Glen is fine at the moment what about if his behaviour deteriorates again. I do not appreciate being pushed into something that I am not happy with.

 

Hi.From what you say am I right in understanding that Glen has a diagnosis of ASD but also has severe learning difficulties ?

If that is the case it is extremely important to have an assessment done in an environment where staff have understanding of ASD and severe learning difficulties.

All of the comments that I have made in earlier posts also apply to severe learning difficulties.Mental Health [psychiatric] nurses do not have specific training in this area which can be very complex.As I have said it used to be Mental Handicap Nurses who were speciaists in this area.

Teenagers who have severe learning difficulties but do not have AS can also exhibit challenging behaviour related to their learning difficulties.

In my local CAMHS there is a specific team who support the needs of children and teenagers with ASD and severe learning difficuties.It might be worth exploring whether there is a similar team in your area.

I also remember that there is a specific organisation which supports parents and carers of children who exhibit challenging behaviour related to learning difficulties.

I will see if I can find the web info over the weekend and will post for you.

As I have mentioned my friends son can exhibit behviour which is very difficult to manage even for a supportive and very dedicated family.It must be very stressful for you when the people who should be helping are not supportive. <'>

Karen.

Edited October 23, 2009 by Karen A

[Karen A]

Hi Jeanne,

Can I suggest you get in touch with the challenging behaviour foundation www.thecbf.org.uk. They have some excellent information and can provide help and support (also some excellent DVDs).

 

Loraine xxx

 

That is the one I was going to look up.

http://www.thecbf.org.uk/chall-behaviour/index.htm

Edited October 23, 2009 by Karen A

[JeanneA]

Hi Karen, there is no team in my area that specialises in ASD unfortunately this is my concern, they just want to send Glen to a mental health hospital even though he has severe autism and needs to be treated accordingly which worries me will not happen, it could bring on all his negative behaviours. Over the past 7 years I have continually said Glen's problems are school related he needs the right class with the right struture and this has only happened in 2 of the 7 years. When they get it right they for some reason change and put him in a most unsuitable class! At the moment he is in a much more suitable class where he will remain unless I send him to the mental health hospital until next July. After then he should be going into F.E. for 3 years which to me will be just want Glen needs, but it seems others have their own ideas and I am not getting the support I expected. I didn't think that Glen's social worker who I have know for a number years would be so convinced that Glen should go to this hospital as she has known over the years what Glen has been like. The school have never owned up and said 'we have got it wrong' regarding Glen and they never will.

[lisac]

Hi JeanneA, go with your gut instinct. Id say, No to sending him there. If the placement is not ASD specific, you can bet your life he'll come home with all sorts of diagnosis and the treatment is usually more Medications. Your son is not guinea pig.

 

[JeanneA]

Hiya quite agree, in fact it has already been said by the clinical psychologist that medications may be tried whilst Glen is at the hospital! medications just don't work with Glen he has already been tried on various medications in the past and they have all made his behaviour far worse rather than better.

[lisac]

Hi Jeanne. If medications have not worked for your son, and made him worse, then giving them to him in an unfamiliar setting would not gain any positive or realistic results, in my opinion . Also I guess you would not really want him medicated whilst not under your supervision. How horrible for you. I really sometimes wonder if professionals have their own agenda for referals, x

 

[JeanneA]

Yes Lisa I also think the same as you that professionals have their own agenda for referrals! I do feel the school have had a big influence on the psychologist's decision. I am also so disappointed in Glen's social worker in going along with all the other professionals with out hesitation.

[lisac]

Hi Jeanne , it really does pay to have a sixth sense some times. Not always pleasant , but essential. Going through the system with a child with a significant disability teaches you to trust your instincts. In my experience, professionals will stick together, for a variety of reasons . I had something very similar happen to us. The school, social worker and Camhs said my son had to go away to residential schooling the other side of the country and I was being selfish by not allowing him to. They even suggested I had an 'Attachment Disorder'!! ( Hello! im his mother and primary carer for FS!!) They would try and drum it into me at every opportunity. All because the ASD school he attended was ######. ( An LSA told me privately, that it was all down to inadequate staff) I remember coming out of meetings, feeling bullied and would cry for days, convinced they wanted to lock him up and diagnose him with mental health issues. One psychiatrist had already diagnosed psychosis from a two minute observation., but thats another story.

Only you can decide where he goes, no one else, and knowing that can give you confidence .

I would start turning it round and having a bit of a game with them by asking for all kinds of therapies that you think your son would like and suggest they fund it. Maybe some adequate speech and language therapy, play therapy, social skills therapy, a bit of Auditory integration training, and possibly an up to date sensory room within your house, plus regular high quality respite breaks.. Id explain to them that all this would benefit him far more than what they are offering!! , Good luck, x

 

 

 

[JsMum]

 

 

 

Do not let them scare you like this again, like the addmission it has to be with your concent, and again with treatment such as medication it has to have your agreement, the hospital can not trial him on just any medications to see what happens, they also will have to give him a full dx for any medications they try, they cant just dx just so they can give him the medications as dx will take months and months, I would really recommend some proffessional legal representation here, the way the dr is talking its as though you have not got any say, as his mother, parent, guardian you have a lot of rights as does your son too.

 

I really would get her to put it all in writing what she is proposing, ensure that he is assessed that meets medical laws, the way she is suggesting meds is quite possibly neglegent if she doesnt take into acount his presant dx's.

 

JsMumxxx

 

[JeanneA]

Hi Lisa yes I do feel they are drumming into me every time I see them, social worker, psychologist etc. We will not be forced into doing something which is totally against our wishes. We await to hear from the psychologist as she would like to see me and my hubby to discuss exactly what the treatment etc would be at this hospital. Whatever she says I am certain our answer will be NO.

[JeanneA]

Hi, I've just heard from the children legal centre and a solicitor is more than happy to take on my case, she said I cannot be forced into sending Glen away. In the next few days I will be receiving info from her and if I want to take this further then she is more than happy to plead my case. I am going to see the Clinical Pyschologist first to see what she has to say then will take it from there.

[cmuir]

Hi

 

Have you tried contacting Young Minds for advice since they may have encountered parents facing a similar/same situation before?

 

http://www.youngminds.org.uk/

 

I've found them to be very helpful in the past.

 

Caroline.

[Sally44]

Do you feel your son has sensory issues? I just ask as the list of difficulties you list could be quite badly affected by sensory integration disorder or sensory hypersensitivities. For example if he is tactile sensitive then stripping off is common, but to 'outsiders' can look like 'exposing themselves' when it is not that at all. I have sensory issues myself but no other diagnosis, and I too have to get off clothing that is causing me significant problems. No-one can understand that unless you feel it yourself. For example lace on clothing becomes physically painful to me. On one occasion I had to take off a new T-shirt because the tag felt like a needle sticking in me. So under my coat I just had no bra on! If anyone had 'seen' or 'known' what I had done that could have been considered bizarre.

And your sons toiletting problems are all too common, you only have to look at the posts!

And if he has language communication problems to the extent that he is mute to a large extent, then there could be all kinds of difficulties and frustrations coming from that.

It might be worth looking at other schooling or placement options.

If I were in your position I would be concerned that 'autistic' or possible 'sensory' behaviour is going to be diagnosed as 'mental illness' and how will these professionals know the difference when they don't have any ASD specific experience or training. And the medical route is usually medication anyway.