Clinical Assessement

[MelowMeldrew]

What does this really mean ? My son was last examined when he was 4 and diagnosed autistic, he is now near 16 ! Because we have had so many issues recently we cannot cope with, we have asked for this and a full diagnostic examination medically via blood tests etc to see if hormonal imbalances are driving the very chaotic events we are experiencing at present, suffice today, we have informed the social worker we could not handle our son for any extended length of time at present. We are getting waffle and agencies need to be informed, but I did this 2 YEARS ago and they never moved on it, just left us to get on with things. This summer holiday we did not think we would survive looking after and containing his erratic behaviours and called in the Doctor. He just said our son is physically OK and walked away, this we knew already as Autism is not predominantly like a limp or anything ! I've never in my life experienced the full range of Autism as we have this year, it is 24/7 and the only time it stops is when he is too exhausted to continue. I asked for the new assessments and regrettably a need for some respite...am not sure what they involve frankly only that in my view he is very long overdue for having them, albeit they waited for the parents to crack first before they would listen ! Mum has caved in it is just Dad containing what he can.

 

Will he have to stay in some unit and be assessed over time ? they won't get any idea by an odd hour watching him. Who decides on medical interventions (Ritalin whatever ?), my doc won't even talk to us says it is up to the clinical psychologist now, but there are huge waiting times and the SS seem to not understand what they need to do and asking me. I contacted the school myself to send reports to the clinic consultant, I did ask my GP to do so and social services, since they will do nothing until they have all the reports in front of them, the SS are very slow in doing this and I'm getting totally frustrated at their inaction, what do I want with them if I have to do everything ? the issue is medical people need paperwork with their names on it, not ours... yet only we are aware of the full extent of what is going on. We feel very left to get on with it, and reaching a point where we won't be able to soon. They want the balloon to go up before they move... anyone else waited 10 YEARS for their child to be examined properly !

[coolblue]

We are thankfully not up against the same problems as yourself, but I've been really taken aback by the fact that it is so difficult to get a full medical assessment of a child with obvious developmental and health issues. It took over 8 years to get a diagnosis, but 'autism' doesn't explain the well-documented sensory and motor problems our son experiences. He has visual and auditory and balance problems, but has never had a full examination of his visual, auditory or vestibular function - everyone guesses it's a brain disorder. How do they know if they haven't checked his ears or eyes? And we haven't started on the dietary and allergy issues. We have, however been offered Prozac for his 'anxiety' - what anxiety?

 

There was a report out last week about poor child healthcare, wasn't there? But of course I can't find it.

 

cb

[call me jaded]

What's he like in school and are they experiencing the same difficulties? If so then it sounds like time to call an early review of the statement as some kind of residential care (wwekly boarding/college placement) might be needed.

 

It's really down to social care and I am cynical enough to think that if you don't present a risk to the safety and well-being of the child then there will be nothing in the budget.

 

Have you involved a local councillor? Usually opposition councillors are good for holding the local authority to account on yur behalf.

[MelowMeldrew]

What's he like in school and are they experiencing the same difficulties? If so then it sounds like time to call an early review of the statement as some kind of residential care (wwekly boarding/college placement) might be needed.

 

It's really down to social care and I am cynical enough to think that if you don't present a risk to the safety and well-being of the child then there will be nothing in the budget.

 

Have you involved a local councillor? Usually opposition councillors are good for holding the local authority to account on yur behalf.

 

He seems not to be presenting the issues as badly at school as he is at home... yet (But has started) ! which is no help to us of course. But he has a record of duality. School gets Dr Jekyll, Home gets Mr Hyde it's always been that way (I have lost interest frankly in school reports, it just looks like they are talking about a different child to mine). Obviously a special school has very strict 'containment' rules in place and very organised routines, as well as fortunately, a fair degree of small classes and adult support in them. Of course us poor ole parents have no way whatever of matching that type of routine or support and have to teach our child to exist and function in the real world where there are no routines, people are not accepting or willing to make allowances, and he HAS to get used to a lot of things that are not presented on the school front, like issues he has difficulty with not presented there. Schools exist in a vacuum mostly. I can only assume that my son has been conditioned now to the type of support he gets at school and cannot cope when they are not there, and he is outside it, I suggested they were institutionalising him by default and making it more difficult for us. I think the difference in Home/School approach is at the root of most of it, as parents we have to look beyond school, as educationalists they stop taking any further interest when he leaves, a statistic. The problem with all that, is the system then looks at you again, school great, home not so great, what are WE doing wrong. And of course anything that happens is Stress related ! I said no it isn't, he does what he does because he is driven to do it, it's autism, and he gets a lot of fun in his own way with the behaviours he exhibits, sadly not as much fun for the rest of us ! IAfter his entire lifetime, I have a fair idea what stresses him out, and they haven't even examined him yet, I've told school I cannot duplicate what they are doing so they need to adjust their methods, and as there is no back up outside school for us to do that. We can do nothing until the gears move, and as we know they move very slowly. There is a list, at least they said, you are now on it !

[MelowMeldrew]

Seems the school is now worried, I have been sent a letter saying they are going to bring in a clinical psychologist into the school to assess his behaviour there. If they listened to us 14 MONTHS ago...

[call me jaded]

The dreaded 'I' word came into my head before I got to that part of your post.

 

It would seem wheels are turning very very slowly. Keep making some noise.

[JeanneA]

Hi hope all goes well for you and your son with this assessment. Next Thursday 3 specialists are coming from Prudhoe Hospital in Northumberland to see my son at home. They will decide if he is a suitable young person to have a mental health assessment in their hospital. Glen would be away 6 or 8 weeks as an inpatient. I realise how much you want an assessment for your son but I'm not so sure that it would be the right thing for my son, I will listen to what they have to say next week and whether they think it would be in Glen's interest to have an assessment or whether it could make matters worse, i.e. going away for that length of time could result in Glen regressing and not actually achieving anything, especially as he is a very anxious young person always has been and also very complexed. Anyway keep us updated with what is happening with your son.

[MelowMeldrew]

Hi hope all goes well for you and your son with this assessment. Next Thursday 3 specialists are coming from Prudhoe Hospital in Northumberland to see my son at home. They will decide if he is a suitable young person to have a mental health assessment in their hospital. Glen would be away 6 or 8 weeks as an inpatient. I realise how much you want an assessment for your son but I'm not so sure that it would be the right thing for my son, I will listen to what they have to say next week and whether they think it would be in Glen's interest to have an assessment or whether it could make matters worse, i.e. going away for that length of time could result in Glen regressing and not actually achieving anything, especially as he is a very anxious young person always has been and also very complexed. Anyway keep us updated with what is happening with your son.

 

The primary issue is for my son to find some calm in his life. I thought very long and hard about assessments, as you say you really cannot know what they will find or even assume, given the gross incompetence of 'specialists' I have seen so far.... However 10 years hard slog by us has not resolved the issue, we're running out of diversions and 'containing' the problem. it is seeing him in distress that has prompted my request and not just how hard he has made home life for us. I am quite prepared to go on until I drop, he's my son, but this will not help him. The head has to rule the heart at some point, you are no use if YOU are flat on your back. If it is a matter of some medication or something, he won't be the first autistic even in his class to have had it. If my son gets some calming measure then this will make us calmer too. However until he is properly assessed we don't really know what is driving him. We're in an uneasy silence at the moment... none of us really wanting to force the issue with him. I think the next weeks will see some result or other. The lad has forced that himself. Which is ironic he can make things happen in a week we couldn't as parents make happen in years, nobody listens to us do they ? Of course it may well transpire they will do nowt !

[JeanneA]

I really hope you do get the help you truly deserve as a family. It is not easy for us as parents, we do our best but sometimes its never enough. Do keep us updated on your situation.

[MelowMeldrew]

I really hope you do get the help you truly deserve as a family. It is not easy for us as parents, we do our best but sometimes its never enough. Do keep us updated on your situation.

 

 

SS went to the school, and an clinical psychologist was called to observe my son's behaviours. SS now want to refer him to an local clinical psychologist as a matter or urgency. We had been waiting for an appointment anyway, now my son has forced the issue. I think it is typical of the school, however observations there only give a clue to his reactions in the school, and not at home where his actions are much more serious and an issue. My son must have shocked them there too ! I'm not well up on hormone imbalances and autism, but I tend to think a lot of the issue is there. His reactions the last 6 months are totally different to what we were used to, it is such a difference that has forced the whole thing. From virtually mute, he has gone to shouting and ranting, from very shy and clinging behaviour to his parents, he has gone to an hyper active 'running-man' who has no awareness of other people, and appears not to want to hear what people are saying or totally ignoring them, he has no ability to even sit down or concentrate for longer than 50 seconds at a time, whereas before he would play his computer games for a long time with no issues, now he can hardly get past the opening screen of it. Sudden changes suggest an imbalance somewhere, however sudden change is what he is about, there was never much warning of what he would say, do or react, there was never a lead up to things, one day he would do things, another day he would never do something else again. I warned the school and SS a year and a half ago there were changes coming rather too fast for us to deal with, they and the school looked on them as positive, but he was at home total disruption in action, no matter how well he did at class first. Does a clinical examination cover a medical one ? it doesn't does it ? If there is hormone imbalances he has to be tested first. As we noted 100% increase (!) on his appetite, he would eat literally anything that was edible, he was 'grazing' around the clock, eating raw potatoes, 6 oranges at a time etc.... He has gone from a very fussy eater to someone who will eat anything in a matter of weeks. I'm just thrown by it all..

[JeanneA]

Hi hope you don't have to wait too long for an appointment for your son. Hopefully now they are aware of just how bad the situation is they will act quickly. Keep us updated.

[MelowMeldrew]

Hi hope you don't have to wait too long for an appointment for your son. Hopefully now they are aware of just how bad the situation is they will act quickly. Keep us updated.

 

 

I am due an 'official' visit tomorrow by his social worker who has applied for priority assessment. Pity he ignored the last 14 MONTHS of us asking for that. Always the same isn't it, we voice concerns for ages, they ignore, the school hits a problem everything starts moving ! The system only listens to the system. How many other parents are forced to endure real issues for months and even years on end because of that. I want an medical examination done as well, as I feel there is room to investigate hormonal imbalance too, his GP is useless, when I asked him for referral he didn't even look at the boy, just told his nurse to weigh and measure how tall he was ! If assessment is going to now take place, I am going to demand they do a proper job of it. I read an autistic site however that stated 2 out of 3 autistics do NOT benefit via MH support or therapies (?) Is it still all uphill ? MH teams are not much use unless they have an autistic specialist there ?

[trekster]

Melonmeldrew i hear you and can understand the frustrations you have over your son. NAs current campaign is called "you need to know" which is about child mental health problems. If you can get a copy of the academic study mentioned in Communication magazine Autumn 2010. It stated that "children with MH problems in the ASD category that didn't get treated became adults with MH problems" that was in comparison with the non-ASD category. It is a US study and is in the Journal of Autism and Developmental Disorders, 2010, March 23. Joshi, G. et al. "The heavy burden of psychiatric comorbidity in youth with autism spectrum disorders: a large comparative study of psychiatrically referred population".

 

Good luck and keep hacking away at the system until it breaks!

[MelowMeldrew]

Melonmeldrew i hear you and can understand the frustrations you have over your son. NAs current campaign is called "you need to know" which is about child mental health problems. If you can get a copy of the academic study mentioned in Communication magazine Autumn 2010. It stated that "children with MH problems in the ASD category that didn't get treated became adults with MH problems" that was in comparison with the non-ASD category. It is a US study and is in the Journal of Autism and Developmental Disorders, 2010, March 23. Joshi, G. et al. "The heavy burden of psychiatric comorbidity in youth with autism spectrum disorders: a large comparative study of psychiatrically referred population".

 

Good luck and keep hacking away at the system until it breaks!

 

 

Will do ! I am surprised initially they didn't consider there might be an medical issue involved, especially as he is in the middle of puberty, and no doubt hormones are firing on all 8 cylinders, as hormone imbalance can be addressed. they could be treating result without addressing the cause. However taking on a clinical psychologist and half-educated social service is fraught with issues isn't it, nobody listens to parents, if they had my son would have had all this 10 years ago..... Perhaps we could do with some representation ? Sadly British systems ridicule American surveys and will not accept or even read them. My GP said stop reading online listen only to what I tell you. I am the professional they aren't.

[JeanneA]

I totally agree with what you have said, no one listens to us as parents they think they know best. These professionals seem to dismiss puberty, when we as parents know that this is a very difficult time for our kids especially when they probably don't understand what is happening to their bodies.