Support following diagnosis

[mum22boys]

Hi,

 

I haven't been around for a while but i'm back for some advice.

 

M was diagnosed ASD a year ago. There was no real shock to the diagnosis as we had been pushing to find out what was wrong for 2 years but the consultants explanation to the 'extent' of the autism came as a bit of a shock. However we knew he would get a diagnosis. I don't know if reality has only just sunk in but I am now really concerned that M has no support, no mention of getting support or help and i'm starting to wonder if i'm still going to be having my child throw himself on the floor when the slightest thing is different or not how he expected when he is 15, 16 or older...

 

How is he ever going to understand that things can be different, or the outcome to something might not be as he expects if there is no one giving him support and teaching him these things. Will he always throw himself across chairs, rock back and forth and scream when he can't cope or will things change???

 

The school (he's in mainstream) have now admitted they don't know what to do about his behaviour. They have the AA teacher out to him and the ed psych. The school says they follow the advice and stratergies but they seem to be geared up just to autism, not M as an individual.

 

M has a consultants appointment in 2 weeks which i intend to ask these questions. What i'd like is to know if anyone has received help and support for their child after the diagnosis, and if so what kind.

 

Thanks

 

mum22boys

[purplehaze]

Hello I don't want to sound negative but I have a 14 yr old son with ASD and I am still looking for support for his behaviour. He has a statement and gets support at school but doesn't get any support for behaviour at home or school really.

 

I was told that my CAMHS in my area do not offer further support after diagnoses unless it is to do with a mental health issues that isn't related to his ASD.

 

So I would be very interested in hearing what support others got also.

 

Sorry I couldn't help you, but you deffinatley need to continue to look, request and ask. X

[hev]

same as purple im afraid

[ASue67]

Same here I got told by CAMHS that I was coping very well with Mike and there was no other support they can offer. They told me this when I was signed off work for 2 months with acute stress

 

Have now applied to Social Services for an assessment of needs as I am at breaking point.

 

<'> <'>

[mum22boys]

Thanks to those that have replied so far <'>

 

I am not suprised by the responses but I am angry that our children get diagnosed then we are sent away to get on with it. I wouldn't expect a child to be diagnosed with for example cerebal palsey and not receive a wheel chair if they needed one so why is it our children are diagnosed with Autism and not even any skills to help them cope for the rest of their lives. It makes me so mad.

 

This is a crazy situation. I WILL be asking lots of questions at M's next appointment.

 

mum22boys

[KarenT]

Same here, and it appears to be the norm.

 

If you're beyond the level of basic parenting courses then there's very little there to support our kids, unless they develop mental health issues on top of their dx. It really hacks me off that CAMHS generally won't be proactive - they're more likely to wait till a child breaks before offering support to put them back together again. Totaly the wrong way round.

 

I still remember the time we went to see J's psychs, desperate because of his anger issues, begging for medication to help him function. It seems like a joke now but they insisted they'd prefer to see how he goes on therapeutic interventions first, yet gave no suggestions of what those interventions should be. It turned out that they were right, as it happens, but it was like a guessing game, and I had to find out for myself what to do for him because nobody was prepared to give me any ideas. Seethe, seethe...

 

Karen

x

[rach04]

when i brought this up with js pead i got sent away with a sheet with a course on dealing with children with adhd the problem i went with was his anxiety and she also told me that when i was taking him to his main problem (crowds) to give him a stress ball and put it in his pocket!!! imagine freaking j and me to tell him to put his hand in his pocket and squeeze his ............ j wet himself laughing .

 

Cahms have dropped him like a hot brick and considering they were the ones that diagnosed you would have thought they would b the ones to give support

 

Oh i did get sent on a parenting course but this was sort of the process for diagnosis and are useless as by that point you have tryed most text book things.

Edited April 12, 2008 by rach04

[sueeltringham]

I'm so cross about this too. Joe was diagnosed almost a year ago. Since then the paediatrician and SLT service have both discharged him. CAHMS saw us twice to follow up our diagnosis then promptly discharged us saying that we, as parents needed to be Joe's therapists and were responsible for his care (????). I'm still fuming as we suffer periods of anxiety which is severely affecting all of us and we are left to 'deal' with it. Support services for those on the spectrum are dire!

 

Sue

[smiley1590]

im 18 years old female late dx of AS - sorri if i ramble n moan but it hurts me badli im abngri n livid wid these peeps they care they wana help peeps how...? im not caying all pysch n CAMHS bad but ma one certainly need reviewing about what they actualli doing to clients and their famlies not mata how old and wat their probs r ! they not doing they job properli or gud enugh in ma eyes! they havnt gota live throu this hell hole at times have they!

 

i go CAMHS but onli realli when they wana see u not when u want them it a different stori altogether i have a whole complex range of mental health probs that i go CAMHS for but becuse it seems like ya coping that end of the stori well no isnt ! i been fighting all ma life for the rite help n support they dunt reali ask me they tell me what they want me to do or have im onli just bin transferred ova to adult services n they are not beta in ma personal opinion i have a pysch e sed i got all info i need to know ask me some stupid questions n gave me some anti depress which is wat realli happened in child services yes i need meds to help settle the depress, mood swings n anx but they talking at u not wid u n theres a huge big difference i cheesed off

 

i feel like im being pushed arund to different places n not realli feeling secure or comfortable neva have dune. i have go ny1 i can ring to offer me support at the end of a phone when i have a complete violent anger agressive rage ma parents have to sort it reali they have becume ma pyschs ova the yrs i cant c the point of CAMHS even being there they havnt dune no good to me just made me worse in ma opinion i find it hard to ttrust n1 like that now i need to feel wanted and part of the process of ma own life need to feel in control not them at th end of the day they go home to their 'normal' well paid job having dune nufink for me certainly i still have the same issues i went there wid 4 years ago n all they do is put me into therapy or meds i need someone to change it and be there for me someone i can rely on t tell ma worries fears and hopes n not be scared they guna let me down n disappoint me all ova agen which they have they failed me and ma family y shuld it just be down to ma family to give me support they got ova stuff going on theyre busy n exhaused it their job for god sake the pyschs to see a way forward but they keep coming up wid the same old boring fings im get more depressed, exhaused fed up afta years of this. ive tried wat they sed but none of it any good it not working. somefink gota give n it gota be them. i have to chase them up for appointments n fings to get dune shuld that be ma job surely not !

 

any professnal can read a bok on AS but it takes someone more to find out the true details behind that case that client that families history n life anyone can read a file have a degree in pycshology but unless u personally live it u dunt realli know nufink about it ! CAMHS in child services told ma mum she a bad mum , a pushy mum ! OMG wateva so see they we go sample of it rite there.these kinds of peeps dunt have consciences about what they do from day to day ovawise they wuldnt do it n cay wat they cay n do wat they do.

 

anyways

 

love ya KirstXxXLoUXxXX

[Shnoing]

Not sure if it is applicable in the UK, but we got speech therapy and occupational therapy for our son (4) independently of his autims dx. As far as we know, this should lessen his perceptory (sp?) problems so when starting school he's already used to listening, speaking clearly and holding his pen therefore there (hopefully) should be less danger of sensory overload.

 

He already ran across roads without looking several times so we're applying for a wheelchair now to be able to prevent him from being hit by a car.

[jb1964]

Oops sorry - don't know how that came out twice.

 

Jb

Edited April 14, 2008 by jb1964

[jb1964]

I was told that my CAMHS in my area do not offer further support after diagnoses unless it is to do with a mental health issues that isn't related to his ASD.

 

Hi,

 

Exactly the same as purplehaze - even things like OCD etc unless extremely severe would come under ASD related.

 

Take care,

Jb

[Enid]

Same no support they gave me respite as an emergency once when thigs were really bad, then nothing, and boy do I need some support at tne moment! .Enid

[owl]

Hi,

 

I haven't been around for a while but i'm back for some advice.

 

M was diagnosed ASD a year ago. There was no real shock to the diagnosis as we had been pushing to find out what was wrong for 2 years but the consultants explanation to the 'extent' of the autism came as a bit of a shock. However we knew he would get a diagnosis. I don't know if reality has only just sunk in but I am now really concerned that M has no support, no mention of getting support or help and i'm starting to wonder if i'm still going to be having my child throw himself on the floor when the slightest thing is different or not how he expected when he is 15, 16 or older...

 

How is he ever going to understand that things can be different, or the outcome to something might not be as he expects if there is no one giving him support and teaching him these things. Will he always throw himself across chairs, rock back and forth and scream when he can't cope or will things change???

 

The school (he's in mainstream) have now admitted they don't know what to do about his behaviour. They have the AA teacher out to him and the ed psych. The school says they follow the advice and stratergies but they seem to be geared up just to autism, not M as an individual.

 

M has a consultants appointment in 2 weeks which i intend to ask these questions. What i'd like is to know if anyone has received help and support for their child after the diagnosis, and if so what kind.

 

Thanks

 

mum22boys Hi there,- I can really identify with how you are feeling, although a while back now. I don't know, obviously, how bad your child's problems in School are, but you have Highlighted the key problem,- geared up to autism, not the child. At least they are geared up to the subject, but it can be over applied as a science, and yr child is not a science. My son is 2o now, and the best advice I can give you is inform yourself so that you can't be talked down ( Much better than confrontation)

stand fast when you are sure what's right for your son, keep a diary for yourself of different behaviours/ strategies that work or don't work. and keep talking on here, - i wish there had been something like this for us ealier.Usually behaviours change as the child grows, and many things improve. You'll be amazed what you can do together. Most of all, never let anyone imply that it's yr fault ITS NOT! best wishes owl

[Mookamoo]

Hi

 

I can be positive - we have had some support.

 

We were given the number of Autism Suffolk (we live in Suffolk.....) and they suggested we go to a Post Diagnosis Workshop. We were fortunate to persuade the Head teacher and E's teacher attend the workshop. It really helped getting them and they went away knowing what they had to do to help E and help us as parents. We have had a home visit from Autism Suffolk and they have given us access to all the helplines, resources you could possibly need and they also have a library of help books which we can use. Also they are at the end of the phone if needed.

 

E also now goes to an ASD Saturday club which has been a great help in showing him that there are others who think like him. He is still on the waiting list for a place but they allow children to stay in the meantime if their parent/guardian stays with them, (which is fine by me as I get to play basketball and table football!)

 

We are lucky in that we live in sleepy 'ol Suffolk and E goes to a school with only 80 pupils, which means all the teachers and TAs know him and all try their hardest to deal with him in a consistent manner. Thats not to say we don't have problems - (I have spent and hour today after school with the head explaining to me how he had got his 'privates out in class....) but I honestly believe the school is doing their best and in most cases doing it well.

 

We found out about Autism Suffolk because the consultant who diagnosed E works for them and we found out about the Saturday Club from a leaflet at the surgery where he went for his tests.

 

Hope that helps

[smiley1590]

u lucki then most peeps dunt have nufink to cling on to like me and ma family well lost trust n hope along the way i hope some day i will regain what i have lost from CAMHS n ova professionals i have worked wid they have caused me endless heartcahe n pain i have now got loads of mental health probs but no one willing to spend enugh of their time which they get paid for alot to listen and take notice i feel let down n angri they just stick me on meds or in for some more therapi im sick of it being treated not very gud at all i feel im being punished for being different being born in this way i didnt ask to be born like this i hate it in fact all im asking for is more support n help but they dunt just seem to get it. i had all i can poss bear im losinbg patience i have depression n anx im suicidal n a self harma i dunt wana be like this but i need them to guide me like their suppose to i gune along wid their suggestions and ideas for years now nufink has touched me i get pushed round from pillar to post to differ kinds of professionals in CAMHS n types of therapies im tired, worn down n exhaused menatlly n emotionally i can see maself having anutha serious melt down/ out burst n when that happens it dangerous real bad ! im violent n agressive i fink i need to recover in hosp !

 

nyways

take care of yaself x

 

love ya loadz

kirst-LoUXxXxX

[sadie]

Hi,

 

I haven't been around for a while but i'm back for some advice.

 

M was diagnosed ASD a year ago. There was no real shock to the diagnosis as we had been pushing to find out what was wrong for 2 years but the consultants explanation to the 'extent' of the autism came as a bit of a shock. However we knew he would get a diagnosis. I don't know if reality has only just sunk in but I am now really concerned that M has no support, no mention of getting support or help and i'm starting to wonder if i'm still going to be having my child throw himself on the floor when the slightest thing is different or not how he expected when he is 15, 16 or older...

 

How is he ever going to understand that things can be different, or the outcome to something might not be as he expects if there is no one giving him support and teaching him these things. Will he always throw himself across chairs, rock back and forth and scream when he can't cope or will things change???

 

The school (he's in mainstream) have now admitted they don't know what to do about his behaviour. They have the AA teacher out to him and the ed psych. The school says they follow the advice and stratergies but they seem to be geared up just to autism, not M as an individual.

 

M has a consultants appointment in 2 weeks which i intend to ask these questions. What i'd like is to know if anyone has received help and support for their child after the diagnosis, and if so what kind.

 

Thanks

 

mum22boys

[sadie]

Hi,

 

I haven't been around for a while but i'm back for some advice.

 

M was diagnosed ASD a year ago. There was no real shock to the diagnosis as we had been pushing to find out what was wrong for 2 years but the consultants explanation to the 'extent' of the autism came as a bit of a shock. However we knew he would get a diagnosis. I don't know if reality has only just sunk in but I am now really concerned that M has no support, no mention of getting support or help and i'm starting to wonder if i'm still going to be having my child throw himself on the floor when the slightest thing is different or not how he expected when he is 15, 16 or older...

 

How is he ever going to understand that things can be different, or the outcome to something might not be as he expects if there is no one giving him support and teaching him these things. Will he always throw himself across chairs, rock back and forth and scream when he can't cope or will things change???

 

The school (he's in mainstream) have now admitted they don't know what to do about his behaviour. They have the AA teacher out to him and the ed psych. The school says they follow the advice and stratergies but they seem to be geared up just to autism, not M as an individual.

 

M has a consultants appointment in 2 weeks which i intend to ask these questions. What i'd like is to know if anyone has received help and support for their child after the diagnosis, and if so what kind.

 

Thanks

 

mum22boys

 

 

Hi, sorry to hear of your difficulties. We had a lot of support from CAMHS before my dd dxed, however her behaviour was pretty extreme at the time and school (MLD unit) couldn't cope. Social services were useless though ,even though all fam ily at breaking point. :wallbash : CAMHS and SALT and teachers all worked together for long time in concert. Dd been signed off today and I am quite satisfied. Now dd has dx social services arranged home from home even though no longer really necessary (though quite happy to accept the respite and view it as good for my dd as she has v. little interaction with others). CAMHS have said if any further probs to get back in contact.

[sesley]

Hi,

 

I haven't been around for a while but i'm back for some advice.

 

M was diagnosed ASD a year ago. There was no real shock to the diagnosis as we had been pushing to find out what was wrong for 2 years but the consultants explanation to the 'extent' of the autism came as a bit of a shock. However we knew he would get a diagnosis. I don't know if reality has only just sunk in but I am now really concerned that M has no support, no mention of getting support or help and i'm starting to wonder if i'm still going to be having my child throw himself on the floor when the slightest thing is different or not how he expected when he is 15, 16 or older...

 

How is he ever going to understand that things can be different, or the outcome to something might not be as he expects if there is no one giving him support and teaching him these things. Will he always throw himself across chairs, rock back and forth and scream when he can't cope or will things change???

 

The school (he's in mainstream) have now admitted they don't know what to do about his behaviour. They have the AA teacher out to him and the ed psych. The school says they follow the advice and stratergies but they seem to be geared up just to autism, not M as an individual.

 

M has a consultants appointment in 2 weeks which i intend to ask these questions. What i'd like is to know if anyone has received help and support for their child after the diagnosis, and if so what kind.

 

Thanks

 

mum22boys

 

 

 

 

The only support we initially got after the dazed what do we do now feeling was , joining in a Earlybird sceheme run by the NAS set up firsly in Yorkshire somewhere, and we found it a invaluble experience it taught us about autism and how it affects the person and the family and carers and how to communitcate with your child , the whole experience gave us a confidence boost, just knowing we weren't alone in our challenges and we were in contact with people from Educational services and other revelant people for advice and support here is a address from the NAS with a sample of Earlybird news, http://www.nas.org.uk/nas/jsp/polopoly.jsp...42&a=2635we are also in contact regulary with other parents who were also on the course and we have a regular get together and contact with other agenceys that can give advise and support for things like challenges and rights at school. is there anyone to contact to see if there are any simular or same programs you could join?

near you? Edited May 1, 2008 by sesley

[caren]

We too have had support once we got DX his specialist referred us to disability team and a group called PIPS also gave us sheets on different groups to join he also get speech and language at school also a autism specialist goes into school once a week to work with K and his support ,the disability team one guy help us with his poor diet , smearing , pictorial timetable and anything else i request , also a lady helping us make passports for kurtis to carry around , PIPS take him bowling once a week with 1 on 1 support but i still attend too as K wants me there still , over all i'm pleased with the help with stuff that i would other wise not be able to do

[smiley1590]

heyz everyone!

 

it hurts to have little or no support when ya basicalli doing it all on ya own i wana be independent but i also need to know theres someone to call on if i have a crisis everyfinks always bin about understanding n communication wid ma probs n fings i bin throu lyf just realli cheeses alot of the tyme seems like u realli have to be begging n in a pretti dire state of mind to actualli be checked on n recieve helped i feel lyke no one can be bothered wid me lyke it just a job title wid them wid a good wage so they aint gota wozz about anyfink realli! theyve got the ###### and ###### i got! i feel low n depressed!

 

love ya loadz

Kirst-LoUXxXx