Information at diagnosis

[UltraMum]

I made this poll as I realised, when looking for information on standards for parents as part of my degree course, that very little existed even for parents of NT children.

 

I thought back to what happened to us post diagnosis and how little information was given to us. When my son's HFA was diagnosed my husband and I left the hospital with a six month follow-up appointment and a copy of "Asperger syndrome - practical strategies for the classroom: a teacher's guide". That was three years ago and I wondered whether things were better now, or does it just depend on areas?

[UltraMum]

BTW - the university website appears to be down so the link won't work at the moment!

[BusyLizzie100]

When my son was diagnosed with ASD we asked what happens now, and were told that we would go home and be supported by our local services. We have had to fight for some kind of input all the way, and have only learnt about ASD through reading extensively and doing our own research. No support at home. No one seems to care what happens at home at all.

[smiley]

M's pead is a lovely lady - but she had absolutely no info to hand me. Gave me numbers for NAS etc. She's tried to get him into social skills groups and dug up all the support groups she can find - there's just nothing around here!! She's just as frustrated as we are ....... .

[Lynden]

Well Logans paed recommended the Lorna Wing book, his SLT had already given me the Hanen programme More than Words book. We're booked in for a weeks full assessment at the end of Nov and the educational pyschologist is coming to see us next week. So we seem to have plenty support but I'm not really sure we've had that much information - most of what we know so far has been researched ourselves - and a lot of it comes from here which is nice :-)

 

Lynne

Edited October 27, 2005 by LLaverty

[BuntyB]

I got given info on a Support Group, phoned them and they promised to send me some info, but it never happened!

 

I found out that I wasn't the only one- other parents say they get told a diagnosis, then are left to find support all by themselves.

 

Other people don't really care, it's from other parents that you get the best support, like on here!

 

I help run a different support group now, which is great, because we can offer stuff like social skills training, sport, rebound therapy, home visits etc etc, but we have to apply for funding for all of it, which is a bit of a pain!

 

I have researched stuff on the Internet, but there is so much it is mind boggling. I am trying to put together the most important basic stuff with links to more info on my website which is still under construcion- decided to have a break and come on here for a chat!

 

Shona

[Jadensmum]

When J was diagnosed, I didn't find the paedatrician particularly helpful - but everyone around her was. The O/T, SALT and Health Visitor were fantastic and I went on quite a few courses.

 

I think I may have got some leaflets (lost somewhere in my "filing system") but I looked the NAS up on the net.

 

Denisex

[mossgrove]

We were lucky as we were put in touch with a wonderful lady from the local Autistic Society who came to the house and went through it with ius including opointers to things like DLA.

 

Sadly I beieve she has moved on and the service is no longer available.

 

Simon

[Malika]

Hi

 

I was given a follow up appointment to discuss their report and finding but this was on my request.

Then nothing happened except that they send the report to the school who tried hard to ignore it until I decided to send a request to the LEA for a statutory assessment. Eventualy sometimes before the SENDIST hearing the mental health unit ask me to be part of a parent group where professional came to talk to us this was good but a bit too little too late.

 

Malika.

[KarenT]

Ha-ha!! No information whatsoever!!

 

I'm trying to be fair here. We don't have a full dx yet so perhaps that's why nothing has been advised just yet, but back in January J's psychiatrist was utterly convinced at our first meeting that J had some form of ASD. All we were given was the web address for the NAS, which I'd already been through myself. She promised to send me info on Contact A Family but it never came.

 

As with many other people here I've had to fight for everything I've got for J and find resources for myself, even though they are definitely available in this area. I called a crisis meeting with the psych in June because I could no longer cope with J's increasingly erratic behaviour, and asked outright if there was anything she could suggest via Child and Family, and it was only then that she discussed further support. It was also myself who asked her about cranial osteopathy - nothing at all was brought up from the professionals involved in his assessment. No support groups, local charities, treatments, even though they're all out there.

 

Karen

x

[sharron]

l had a follow up appointment with paediatriction to discuss his diagnosis, he also gave us some information on local support groups and he also arranged for the early years support team to come and see me.

l needed the follow up appointment as l was in tears when l left his office so l did not take in all what he was saying.

the local support group was very helpful they came out that night and borrowed me some books to read.

[littlenemo]

Com's previous diagnosis was already in place, dyspraxia and dyslexia, and he had been referred to OT (which took 4 years).

I had no information from either consultant and to be honest the first consultant was cr*p so it wasn't very surprising.

 

I don't know if the second consultant didn't give information because I already had good information and understood what was being diagnosed and why and what the basic issues were by the time AS was diagnosed.

 

however, I do have direct access to the consultant by email and I use it when I really need advice, he is extremely supportive.

 

Also the consultant supported us in the weeks immediately after diagnosis by attending tribunal as a witness (free!) because the LEA refused to accept the diagnositic report as late evidence - the effect was an immediate back-pedalling by the LEA and a very prompt statutory assessment. This was exactly what we needed, so although we weren't given formal information or follow up appointments we were happy with the response.

 

At the same time we had organised a private diagnosis because we did not expect to get diagnosis on the first meeting with a new consultant at CAMHS and we knew we needed it for the tribunal if there was to be any chance of getting the assessment.

This was the week after diagnosis so, although we could still have cancelled and just lost the deposit we asked for a strategy based consultation and we got heaps of good information and were offered private S&L and social skills provision through this, also summer school. (didn't take this up as it was in Wales and we're not, but it did give us an idea of what to ask for). I also have the possibility of telephone consultations at any time (have to pay through the nose though) and the centre contact us once a year to check Com's progress.

 

very different from CAHMS but then CAMHS didn't cost us almost �1000 (that includes travel and accomodation, mind).

 

again this was 5 years ago so I don't know if things have improved at CAMHS

 

Zemanski

[mossgrove]

I don't know if things have improved at CAMHS

 

This is a bit of a postcode lottery.

 

We have a support worker from CAMHS who comes to the house from time to time, and a pyscologist from there is also involved. They are also putting in place an anger managment programme for J (in conjunction with the school). They have also attended many of the formal meetings with school and various asessments so I would say we get a pretty good service from them.

 

In some other areas the CAMHS service seems to be almost non-existent.

 

Simon

[lancelot]

Hi all,

I ticked 'follow up appointment', but it didn't happen until 12 months later!

[DAS999]

My girlfriend (mid 20's) was recently diagnosed and got no help, advice, support, information or any thing! I have sent email after email to social services asking about support with no reply except "I will pass your information on". She has been left totally in the dark about her condition. She just thinks she is a freak now and that no one likes her. Her confidence has gone down and she has lost skills and I even think her communication is worse. The diagnosis with no support or information has left her anxious and confused. Scared and alone. She doesn't have a clue what ASD is she even asked me if she could die from it!

[Flora]

I ticked no information. I had to find out all my own information.

 

Lauren

[DaisyProudfoot]

I got no information, just the report on his dx.

 

However, after that I've leaflets and support from his paed and he's seeing another psychiatrist about his behaviour problems so things are looking up.

[darky]

i ticked "other" because i was given a couple of leaflets and that was it. we do get regular follow ups because my daughter is on meds but thats it. anything i have learnt is from my daughter and the net! (and a very good circle of good freinds)

[stressedmumto2]

My son has not had a diagnosis of asd yet but he does have diagnosis of adhd.

 

The paeditricain has been pretty good and given lots of advice, has also put referall in for 2nd opinion and give me contact details of an asd course that I went on. It has helped wonders and coming onto this form and knowing some great people has helped alot.

 

I don't know what is wrong with son and so at times have lost alot of confidence in myself, but certain people have kept me strong by telling me I have to keep fighting.

 

At present we are getting respite but he is excluded from school and this is why. In some ways I feel like I am getting alot of support, alot more than some poeple I know anyway. But it is a real battle to get it.

 

I will soon be getting support in the home, but home has at times really reached crisis point to the stage where I feel I can no longer cope.

 

All I can say is if you want something put pressure on everyone. Letters, e-mails, phone calls ask for multi-agency meetings and get solicitors involved.

 

It takes months/years and it takes it out of you but at least it feels good getting somewhere, don't be fobbed off by "it's not a disability in our area, we don't do respite, there are people with greater needs etc "

 

[kevilou]

I ticked no

We have attended CAMH since 1998 with R. Up until resently it was felt more important that we found stratergies to deal with behaviour etc and no importance was placed on dx, don't really think they knew at the time what label to give him

My 12 yr old son was dx with dyspraxia in 2000 and apparently last year with asd - only we were not told

I am pretty certain if they had of mentioned asd dx to us last year, we wouldn't have felt the need to go again last week and demand a label for our son.

Shock really wasn't the word when we were told we already had one

We received no info on the diagnosis let alone any follow up info

I have found out more by surfing the net and this forum

In fact I think the forum is great for help and support

Seems to me you have to become the expert yourself to get anyone in authority to listen.

[LizK]

I wanted to tick more than one box

 

We have 4 mthly follow up appt with DSs paediatrician. We were also referred to the Early Years Support Team and recommended the Tony Attwood book that I'd already read! Paediatrician also mentioned Early Bird too. We'd been referred to the SALT service a couple of years before. Over this time despite me asking our SALT what I could do to help DS's speech or any books I could read I only found out about More Than Words from this forum which I htink is a little alarming (the ST lack of knowledge not this forum!)

 

Lx

[Mother in Need]

I voted for follow up appointment, but that appt was for my son, not for me (though I was there ofcourse) and it was appalling. The psychologist had some print-outs from the NAS website and simply read it to him; her reading wasn't very good, so he took the stuff out of her hands and asked me to read it, but I at least tried to talk about it and asked him how he felt etc. I basically took over the session.

She attempted the same the next session, son got so fed up with it he left the room and the building altogether and refused to see her again... This turned out to be one of the best things he could have done, as that led her to say he needed more intensive input and referred him to a day unit which was absolutely fab. They are the ones that supported him, though in all of that, I didn't get much support from the powers that be. BUT THEN I FOUND YOU ALL WHICH WAS MILES BETTER!

[redberry]

Wow I didnt realise just how lucky we have been.

 

I wanted to tick lots of boxes. We got a follow up appointment about three weeks after the dx. Lots of leaflets an infomation pack really.

 

Our local support team were called and came to see us within a few days and stayed talking to me and my husband M until midnight!

 

Um that said me and M are still reeling. Trying to come to terms with this strange new world.....

 

I just got the dla form...sweet sisters of mercy what kind of a deranged mind does that to parents!

 

redberry

[Brook]

When we were told our sons dx nearly four yrs ago, the paed handed us a leaflet on Autistic Spectrum

disorders, and they loaned us a Lorna Wing book. We then had a follow up appointment 8 weeks after for

any questions etc..

 

Brook