My feelings of having a child undiagnosed

[JsMum]

As some here are aware J has been independantly assessed as having ASD and Sensory Intergration Disorders but these are not diagnosis which our local services like Health, socail services, and Especially the beloved LEA keep on reminding me, after a local hospital peadatrition believed J was Autistic we went throw our local Social and comminications Panel which consisted of a Consultant Peadatrition, a speech and Language Therapist and a Educational Psychologist.

 

The speech and language therapist highlighted out his expressive and reseptive difficulties which are already diagnosed, and the Ed psych descibed his Spersific Learning Difficulties, Auditary DIfficulties and other difficulties with in school, especailly his Social interaction, and they then recieved information from CAHMS who feel J is on the Autistic Spectrum, but the panels decision is that he doesnt meet fully the criteria for Autism, yet the letter goes in detail that J has significant social interaction difficulties and literal understanding of language difficulties but he clearly has other difficulties such as ADHD and ODD, they have totally ignored my contribution and recent CAMHS opinion too.

 

I strongly feel that J is on the spectrum of Autism, the higher end in some cases but he has severe sensory/prossessing/intergrating difficulties too.

 

I strongly feel it is really about is the system trying to save money and barring some children the diagnosis of ASDs because they know they have to offer services and support.

 

what has annoyed me the most is that the consultant peadatrition is the one who does the statementing medical, for the LEA statementing assessments, the Educational Psycholosit who assessed J is actually going to be a witness when we go to SENDIST on behalf of the LEA and the speech and language team all they did in his early years was say he has expressive difficulties but doesnt need any therapy,yet placed him on the waiting list for our local preschool unit only for him to miss it because by the time his name came to the top they had a new rule that only three years old would attend and J was then Four, he then started school and failed.

 

The panel said he cant have Aspergers Syndrome because of his early speech and language difficulties, if it was soo bad why wasnt he accessing the Speech and Language services, why has he been assessed and then discharged.

 

I feel that the whole system is all intertwind and coluding is happening, they dont want to diagnose especially now as were going to sendist of which half of the social comminciations panel are involved in some way throw the LEA.

 

I am very wound up that they want to prevent a diagnosis just on the implications of providing extra services, dont they see the damage that they cause by not diagnosising a child that does actually have an Autistic Spectrum, what makes me even more angry is there is going to be loads of children like my son who is similair, not ticking every single box in Autism but have significant impairments, impacting severely on their lives, leaving them with No diagnosis at all.

 

Im on the process of a second opinion obvously and we are on a ongoing programme from the independant services but we should be entitled to local services, J should have his special needs met where he lives but with impossible criterias and professional intertwinded with the LEA, he wont, ever, imposing more trauma because of the consequences.

 

Im sick of not been able to honestly say he has ASD, its words such as Features or Triats, or a bit like, its not definate or clear.

 

I just wished J was diagnosed with Autism Spectrum Disorder, does that make sence?????

 

 

JsMum

Edited July 11, 2008 by JsMum

[Zosmum]

Hi Jsmum

That makes lots of sense to me.

We had a similar thing with Z, everyone saying she was very complex, not sure why she's like this, got a dx of dyspraxia at 5 yrs then therapist after therapist, Ed psyc, Speech and Language assessments etc, etc. It wasn't until we had TAC meetings and got everyones input all together that we got the dx of ASD, ADHD, Dyspraxia and learning difficulties. Sorry to say this but it took until she was 11.

Maybe you could try to get reports from all involved and then try for TAC meeting. (Team Around the Child) It might just help.

Got to be worth a try

Keep on going, you know your child better than anyone else

[Sooze2]

Sending you <'> <'> <'> <'> <'> <'>

 

Its must be extremely frustrating for you and J. As you know I am only just starting out with dealing with professionals etc so I can't offer any suggestions, but I wanted you to know that I have read your post and can offer a cyber shoulder <'>

[dooday24]

we hav the same prob with reece he isnt diagnosed with anything yet but camhs says he has learning disabilities the peadeatrician says autism and others say severe behavioural problems!!!!

so wen i fill forms out or answer questions i say he could b this or that its so frustrating as he dosnt get the help he needs!!!!!

 

sorry not much helpxxxxx

love donnaxxxxx

[Enid]

I had it for years, still do now to an extent, even though he was dx with ASD by CAHMS and given a named worker from CAT (county autism team) he was then, last year at a reassessment by CAHMS when he was excluded from school, dx with traits of ASD, they said he didnt tick all the boxes in that he didnt have one overall obsession, but he was still to keep his worker from CAT and his statement was amended to say he had ADHD, MLD, and strong traits of ASD and was to be treated like a child with ASD! HOW ABSOLUTLEY MAD IS THAT. Then as his behaviour, as people reading my posts will know, became "off the wall" for want of a better phrase, earlier this year, he was re dx with ASD! YOU COULDNT MAKE IT UP REALLY. <'> Enid

[bjkmummy]

<'> <'> <'> <'>

 

I k now exactly what you are going through - im finding it so hard with joe. his brother was dx so easily but joe who in our opinion so muchmore on the spectrum bt noone will dx him. we have seen a paed for 2 years , ed psych, speech and language, area senco etc etc and so far they willonly commit to he has socialisation issues - we have never been asked to complete questonarries etc etc so its just so frustrating - im in the process of changing paed and asking for the 3rd time now for cahms to see us - we are left in the position of joe starting school in sept withnohlp whatsoever

[KarenT]

I sympathise with you all. I hated that period before diagnosis - I felt I couldn't legitimately stand J's ground because there wasn't a firm explanation for his behaviour and it all sounded so woolly. Professional opinions of him changed overnight once he got the dx and it was so much easier to talk to people about his difficulties, because at long last they were taken seriously rather than the paranoid ramblings of an overprotective parent. Mind you, it hasn't made all the problems go away, there are still those who won't accept his dx (especially on one of his 'good' days). It's surprising how shocked some people are by his autistic outbursts, even though the dx has been there in black and white for two years.

 

All I can say is keep on going, fight for your kids as I know you all will, and hopefully you'll get what you need in the end.

 

Karen

x

[darky]

Hi J's mum, we had the same with our eldest son. They said he has pragmatic language disorder and Dyspraxia and they won't commit to any more than that. What gets me is even his school think he has Asperger Syndrome and he had some recent assessments to see if he qualified for extra time in exams and the assessor said he had the typical profile of uneven profile of skills as seen in children with Asperger's. We were sent lots of information on Asperger's along with the reports, but we can't get the "rubber stamp" I do think it is becoming political now. Our "ASD nurse specialist" at CAMHS said that they were steering away from diagnosis as it not "helpful" Hmmmmmm more costly more like!!

[bikemad]

<'>

[jb1964]

Hi,

 

It must be difficult when you have such conflicting opinions from all the professionals. Our daughter wasn't diagnosed until she was 12 - we had quietly!!! coped with all her difficulties until the issues affected her eating so badly that suddenly everyone listened - however following diagnosis we found that there is no support or services in this area so even having a diagnosis counts for nothing - it was just she has asd now get on with it.

 

Take care,

Jb

[latmaz]

not got any suggestions but i do know how u feel. same sort of thing here, its so frustrating isnt it!!!

 

hope u get yr diagnosis soon

[lisa35]

and, we couldnt get autism support input UNTIL we got diagnosis, now thers food for thought, they dont make that clear- all very political xx

[stressedmumto2]

J's mum, as you are aware I went through similar situation to you, my son had an early dx of ADHD, then ODD and there was worry he could be developing Conduct Disorder it was only when my son completly started to school refuse that we asked for a second opinion out of Borough and went to Guys Hospital to be seen by the team there. That in itself was a nightmare as my son wouldn't work with them so they couldn't dx too although there report did say he was on the spectrum. We still had to fight the many professionals who indeed tried to twist what they had said in there reports when they was doing his statement. In the end I went down the private route of having him assessed more than anything so I knew what his difficluties were and even though this was expensive and still largely ignored by our LA I have a better understanding of his needs.

 

It's only now because of all of the assessmnets that we are begining to understand him and at last school are taking on board some of his problems although they still don't get his fight or flight!!! which he's at that level alot.

 

He now accesses speech therapy and although at first she couldn't work with him because of his refusal he will now engage and a pattern is emerging of a boy who does have real language delay, coupled by all the other problems which make him very complex. However when seen by the SaLT in primary they said he had no difficulties.

 

I've found there are some professionals who are willing to help and understand and some who definatly aren't, it was interesting at a recent child in need meeting a youth worker who is attached to my son's school come to the meeting and explained to the room the reasons why he has such difficult times with swimming even though he loves it he still can't cope with the transitions and the recation on the workers face said it all, even now she still doesn't think he has those problems.

 

Sorry this post has rambled on to be about my son but I think j's mum you need to ask for an assessment out of borough, what part of the country are you in? could you go to Guys hospital or Newcommen centre and be referred by your paed? State that your son needs another assessment.

 

It is so hard parenting our children but it's so diffiuclt when you are dealing with professionals who just don't want to believe, even now we have many professionals who will not take into account our recent assessments. I really don't know what to say to help you but I think when a pattern emerges that a child is just displaying behavioural difficulties all the problems behind those difficulties are overlooked and they get the wrong dx, all you can do is keep plugging away at it. Hugs to you and J <'> <'>

[teachermum1]

Who privately dx'd him, J's Mum? What is the wording of that report? Won't the LEA accept it?

[JsMum]

Who privately dx'd him, J's Mum? What is the wording of that report? Won't the LEA accept it?

Hi, It was a developmental centre for Autism, brain injury, developmental disorders, they give therapies and help families, we have a detailed programme and we recieve support from them, they did a full assessment and filled out diagnostic papers, but its not a diagnosis, its a multi team aproach, buts its been very helpful in getting some proffessionals to listen, but my local authority have discredited it because it isnt an actual diagnosis.

 

I am going throw a sendist apeal now and trying to get J into a special school, for children with similair difficulties and abilities to him, the LEA have jumped on the fact J isnt diagnosed as ASD and so trying to suggest he doesnt need a special school, but he meets the criteria already, with what he has, and the LEA have reported J has Features of an ASD and he requires the same interventions, but they are using the fact he isnt diagnosed as clause not to send him to special school, yet it was there own LEA who said he doesnt have ASD, when he does, its HFA and they dont diagnose HFA in our area.

 

I am seeking a private assessment now with a private assessment centre that do diagnose, and I now will have to pay, its going to cost nearly �500 but without it I wont get the system to listen and take action, its like its become a battle over a piece of paper, he has had assessments, tests, he has an ASD, but as its not on paper, it doesnt count in our LA.

 

Its mad.

 

JsMum

[Nic m]

Good luck J's mum

 

I wish you every success in this battle, cos that is exactly what it is!

 

You need to keep your own strength up!

I would not have coped without my friends and family to get through my own battle.

 

The lea still do not recognise my dd's needs but health do, and ss after a lengthy investigation (initiated be education, saying i was making up my dd's needs) have put their hands up and said they are staying out of it!!!!!!!!!!

 

We have a good school now and that has made a huge difference.

I wish you luck

 

N x