Fighting for a diagnosis

Thank you all, I will just have to see what happens on the day - he will be out of his comfort zone so he wont be nearly so compliant - infact they probably wont get him to do anything at all. I am going to write down absolutely everything I can think of before hand and bring it with me.

It is so sad that we actually have to fight for a diagnosis for our children - and people, even my close friends I am sure think I am obsessing about it and like misskittykat and shopgirl said, seeing autism everywhere.... thing is, when autism touches your life, it becomes such a major part of it. I would not change my kids for the world though( well maybe a few wee bits here and there) who they are is fine, but I just want the help they need availible.

Thank you all for your help xxx

patrice said:

hi there can anyone please give me some advice my son was diagnosed with ASD last sept he left mainstream school last november, since going to special school he has just had a CAF  and they are questioning his diagnosis of ASD  , my son has had walking difficulties since  he could stand  and kept falling down , he never baby babbled are mixed well at school ect  , at the age of 8 had went through a dcd clinic which diagnosd him with global motor skill diff and short term memory , and aknowledged his left sided weakness but would not give a diagnosis in writing , only said he thought he had dysparxia n hypermobile joints, then he would see him in another 12mnths, i asked my gp for a 2nd opinion which i recieved out of the borough he was diag with unilatrall cp the consultant  then last year gave him a a additional diagnosis of asd  now the school phyciatrist is questioning it and looks like she wants to do assessment hrself?  then at the caf the ot that saw my son at the dcd clinic assesed him for a hour are so at school and said he has no problems ,initiated play, spoke clearly, walked up 2 flights of stairs, listened and done what ws asked of him no behavouaral problems at all , could fasten his shoe laces , even though not tight to keep his shoe on, i didnt agree i couldnt believe it i never see this at all, she then went on to say it was all anxietys not ASD, and that she didnt agree with his diagnosis as she felt it had been made of the cuff as her side have to go through numerouse assesments before giving a diagnosis....  considering she never new my son till he was gone 8 and has never had any involvment with him since then i am annoyed in respect of her  x he wears a afo on his left leg for support and is awaiting his botox injections,his teachers say he is a v well mannered boy who they never see anxietys, at all  ... at home he screams shouts, hits me and his dad and his siblings , growls at us in a robot voice, constanly is argumentative , repeatedly asks the same questions over and over again, at night does not like to sleep , has fears and will not sleep alone ,and  is compelled to tell everyone what he is thinking individually and at night awakes and does the same wakes everyone up independendently to tell them what he wants them to hear, he cannot abide crowds , supermarkets ect gets angry and fearfull,  and becomes aggitated and wants to go , leave ,academically functioning still around a 5yrold, he doesnt understand jokes, sarcasm, and takes everything literally ect ect  i rang his consultant as i was very upsett by this she was so annoyed , now i have a app at home with the dr phsyciatrist coming out to assess my son at home from the cyps and school !! i am not having my son put through assesments again to please others this is just not fare and very upsetting to us all  can anyone help me please xxxxxx

Video your son (secretly if possible) with his behaviours at home.  It is so well known that children with autism can hold it in at school and release at home (see stickied thread on the forum about this).

No need to apologise Patrice, just thought it might help you get more replies if you have your own thread running as more people will see your post.  X

Quite often the threads get duplexed by parents reporting similar experiences, and it can usually be managed. While there is a diagnosis of sorts amongst complications in respect of patrice's child, the fight is to obtain a clear diagnosis.

Besides there's a lot of work her for patrice to rewrite in another thread, though she could ask the Moderators to transfer her postings via "Feedback to NAS".

Assuming that might be arranged there's no reason why patrice cannot get some help from others meantime.

But writing this I note she has just opened a new thread under "ASD"

oh so sorry thankyou x

Hi Patrice

You might get more replies if you put your question in a separate post. You need to click on 'Start a new discussion' at the top of the page.

Having your question in someone elses post means that other's who aren't following this post won't see it.

Hope this helps. X

   thankyou ,  now i dont feel so alone with this, its so upsett me i am so so annoyed and upsett by it all , i was told by his consultant this behaviour at home is the ,  ASD as it brings with it high anxiety's fears , i dread him coming in from school as its literally walking on eggshells, he always complains of headches too as he walks through the door if not that its tightness in his chest ,i think its beacause he is holding  it all in at school so his anxietys are so high sometimes he cant breath for being so worked up ans as he is telling me who has upsett him during the day he gets worse, then the whole show begins its a nightmare  xxx

Totally agree with IntenseWorld.

Although my grandson behaves so well at school, when he comes home he invariably has a headache and tells us about the things that he has struggled with and all the pent up anxiety comes out and his behaviour can be horrendous. When that happens, its really difficult to remember that home is the place he can release it without fear because he feels safe there and its not actually caused by you.

hi there can anyone please give me some advice my son was diagnosed with ASD last sept he left mainstream school last november, since going to special school he has just had a CAF  and they are questioning his diagnosis of ASD  , my son has had walking difficulties since  he could stand  and kept falling down , he never baby babbled are mixed well at school ect  , at the age of 8 had went through a dcd clinic which diagnosd him with global motor skill diff and short term memory , and aknowledged his left sided weakness but would not give a diagnosis in writing , only said he thought he had dysparxia n hypermobile joints, then he would see him in another 12mnths, i asked my gp for a 2nd opinion which i recieved out of the borough he was diag with unilatrall cp the consultant  then last year gave him a a additional diagnosis of asd  now the school phyciatrist is questioning it and looks like she wants to do assessment hrself?  then at the caf the ot that saw my son at the dcd clinic assesed him for a hour are so at school and said he has no problems ,initiated play, spoke clearly, walked up 2 flights of stairs, listened and done what ws asked of him no behavouaral problems at all , could fasten his shoe laces , even though not tight to keep his shoe on, i didnt agree i couldnt believe it i never see this at all, she then went on to say it was all anxietys not ASD, and that she didnt agree with his diagnosis as she felt it had been made of the cuff as her side have to go through numerouse assesments before giving a diagnosis....  considering she never new my son till he was gone 8 and has never had any involvment with him since then i am annoyed in respect of her  x he wears a afo on his left leg for support and is awaiting his botox injections,his teachers say he is a v well mannered boy who they never see anxietys, at all  ... at home he screams shouts, hits me and his dad and his siblings , growls at us in a robot voice, constanly is argumentative , repeatedly asks the same questions over and over again, at night does not like to sleep , has fears and will not sleep alone ,and  is compelled to tell everyone what he is thinking individually and at night awakes and does the same wakes everyone up independendently to tell them what he wants them to hear, he cannot abide crowds , supermarkets ect gets angry and fearfull,  and becomes aggitated and wants to go , leave ,academically functioning still around a 5yrold, he doesnt understand jokes, sarcasm, and takes everything literally ect ect  i rang his consultant as i was very upsett by this she was so annoyed , now i have a app at home with the dr phsyciatrist coming out to assess my son at home from the cyps and school !! i am not having my son put through assesments again to please others this is just not fare and very upsetting to us all  can anyone help me please xxxxxx

The point is, if an autistic child is behaving acceptably at school that doesn't mean they don't need support, because it's often their anxiety and inhibitions that cause them to hold it in and release it at home.  Just because the behaviour happens at home doesn't mean it is caused by home.

We have had similar with my grandson. He is exceptionally well behaved at school, but then again, he loves the routine and order of it all, which is quite common with children on the spectrum. In fact, he is almost too good to be true at school. We love the fact that he behaves so well, considering how badly he can behave everywhere else, but they shouldn't just base their decisions on one area of his life appearing to be 'normal' or on one 'good' day.

Mu grandson is now 11 and he had his 'play assessment' at CAMHS when he was about 6. It was a total shambles...apart from anything else, we all sat behind the 2 way mirror and then realised that he could see us because the light hadn't been turned off. His being able to see us obviously affected how he behaved. Even though it was a seriously faulty assessment (in other ways as well), they still based a large part of their decision on that.

Just as with neuro-typical children, ASD kids all have their good days and bad days and very few will fit perfectly into the diagnostic criteria. I really find it quite amazing that people who are supposedly experts cannot see this...or choose not to see it because it is easier, and cheaper, to blame the parents.

Keep on pushing and I hope you get the answers you need, don't be fobbed off. X

I am astounded that the therapist did not suggest conducting a staggered investigation. In her capacity of professional therapist I would assume that she take it for granted that everyone has their good and bad days. I would suggest going back and asking for your child to be assessed on different days and in different environments. Although you say the therapist was "lovely", I am dubious as to the professionalism of her behaviour. Mental health studies have a long way to go and, unfortunately, we are still in the dark ages where research is concerned. Don't give up.

@christine, don't worry, state services make many, many parents feel that way.  They are entrenched in a culture of cost-cutting, seeing parents as "them and us" (i.e. the enemy) and looking to blame parents before actually seeing the child's issues.  It's a fight for all of us unfortunately and it shouldn't be that way.

hi christine. im in a similar situation with my son and although i have no words of wisom or helpful advice i just wanted to say that i too have times when i end up seriously doubting myself as it just feels like the whole world is seeing a different child. its not good but we keep on fighting.

good luck x

misskittykat said:

I've also been recently accused by someone at work (I work in Children's Social Care) of spotting Autism everywhere and that 'too many' children are now diagnosed for what is just difficult behaviour and bad parenting.  Luckily, I knew the person well and could speak up but it was an uncomfortable moment.

That's horrific, yet sadly all too common amongst social workers.  They desperately need enlightening and in-depth autism training.  Perhaps some of your colleagues would like to sign this petition:

http://www.change.org/en-GB/petitions/mark-lever-act-on-allegations-of-fabricated-or-induced-illness-being-used-as-a-bullying-tactic-by-professionals-on-parents-of-children-with-autism?utm_source=supporter_message&utm_medium=email&utm_campaign=petition_message_notice

Hi Christine

I've not been in the same situation as you exactly but with hindsight, I wish I'd been looking for the signs when my daughter was younger because I missed it completely (and when I was training as a nursery nurse, I actually did a detailed assignment on Autism!).  The speech and language therapist that first saw my daughter didn't pick up the obvious indicators and it was only when the specialist speech and language therapist did the detailed tests, that their was a clear indication.  Yours will need to do those before she can make a proper assessment and I you will get the chance to speak then too.  Our appointment was long and by the middle of it, my daughter couldn't keep up the 'smiley happy, nothings wrong' look anymore and that also helped.

I've also been recently accused by someone at work (I work in Children's Social Care) of spotting Autism everywhere and that 'too many' children are now diagnosed for what is just difficult behaviour and bad parenting.  Luckily, I knew the person well and could speak up but it was an uncomfortable moment.

Video him at home when he is acting very autistic and also show them information on how an autistic person can appear "normal" in a conducive environment.  I'm pretty sure it's in the NHS NICE Guidelines about "not to rule out autism because..." and lists the things and that is one of them (or something similar).