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Very confused by the lack of Communication from professionals!

proud twin mummy

Hello and here goes my first ever post on this topic.

Just a tiny bit of history, my twins were born extremely prematurely and were being seen by consultants at hospital for 2 years. Then referred to community paediactric team where my daughter was discharged age 3, my son continued to be monitored for speech delay.

Age 2.5 years I really started to notice previous ''quirky'' ways seemed to be affectioning the way he was developing. At the 3 year app the paed asked me if i had concerns, I have no idea where the word even came from but i said said ''autism, I think he has autism''. She nodded and said we will keep monitoring and assesing but don't worry.

To cut a very long story short he was seen by SALT and then we went back to pead at that stage we were told ''we are def looking at a diagnoses of autism'' at that stage although i felt very sad there was a wave of relief also. Paed said one more SALT assesment and we will get you back in for ''formal diagnoses'' shortly after.

My son was observed by SALT at Playschool and home and lots of games played with him (assesments I am sure) I was promised i would get a call to explain results and observations and the call never came, no report of anything from those assesments or tests. We were then called back to the Paeds office only to be told ''we cannot diagnose autism at this stage, we will see you after christmas after his first term in school''

And that was that, my jaw must have hit the floor as i was told this is what the diagnoses is and now thats chnaged, i did have a few tears as i explained to the paed this goes against every mothers instinct in my body.

Is this normal for the diagnoses process? Never did get the call from SALT nor a report and that was 6 months ago.

Any advise on this would be so greatly appreciated, i feel so bewildered by the lack of communication with the ''proffesional'' involved Undecided

 

 

  • I will be sure to ask different questions in future :-)

  •  Hi - it's that last line in your post saying "perhaps I have not been asking the correct questions."

    You're not the only 1.

    Thru experience I would say that a general questions such as :

    "have you been trained in autism?"  Answer "yes", is very reassuring.  It's the detail, every time.  So follow up questions :  who trained you, how long was the training period, do you get follow up training and how often??  " how experienced are you?"

    or

    "how's s/he been today?"  Answer "ok".  Very reassuring.  But, is their "ok" the same as yours?  Follow up, get details every time.

    These are just 2 examples off the top of my head but I'm sure you get the point!

  • Thank you again for your support crystal12.

    I will keep chasing the proffesionals, its what is in the best interests of us all. Feels sometimes like the people that are there to help are the people that are merely reading from texts books and have no idea what real life is and the affect it has on others.

    I will always remember that i think what you say about ecconomical with the truth, perhaps I have not been asking the correct questions.

    Thank you again :-)

  • Hi - yes keep on pushing.  I suspect, and it's only a suspicion as I can't prove anything, that diagnosis is taking longer in some areas of the country to save money.  Even if it can be delayed a year, then that's a help to their budget but no help to you, quite the reverse.   Have a look on the home page for advice.  Also there's a site called ipsea which deals with educational matters.  A friend of mine used and she sd it was helpful when she was arguing with the school.  There's a lesson we shd all remember :  sometimes staff are economical with the truth, whether it's support staff for children/adults or school staff.  A good organisation will tell it as it is.  A good organisation shd also understand your child and how autism affects him/her as an individual.  Anything less just isn't good enough.  

  • openheart thank you so much for your reply.

    May I ask how old your boy was when he was diagnosed? If you don't mind of course.

    He has been diagnosed with social communication disorder, repetive and obsessive patterns of behaviour and sensory processing difficulties. He had no support at playschool at all, clearly he wasn't a problem there playing in a corner in a repetive way in his own little world. They did support him at story time, the way they did this was remove him from the circle and take him to another room. This made me cross as I believe they should have supported him to be included in the story time to help him cope rather then remove him. His transistion report from the playschool stated he plays alongside others and not with others, but he is no problem and copes well, and we remove him from ''group'' activities.

    At the transisiton meeting with myself, pre school keyworker, education phycologist, class teacher and senco of primary school a different story was given verbally, a very different account of huge anxiety issues amoungst other things. I am pleased he has now left playschool so i do not have to hear the ''no he is fine'' speech!

    He started school on thursday, he is on school action plus, an IEP will be written up and see how he goes to see if further additional support is necessary.

    The SALT said she would keep him on her caseload and see him every 4-6 weeks but like i say i have heard nothing for just over 6 months. I feel i should make a formal complaint yet i dont normally do complaints.

    I dont wish the diagnoses on my son of course, but a true diagnoses i feel brings an acceptance and understanding. Correct me if i am wrong!

    Thank you also crystal 12 your input makes me think i really should be contacting SALT to find out where the support is for my son!

     

  • Hi - I'd really keep on pushing them.  I don't know where this position has come from when they used to diagnose autism in 2-3 yr olds before.  Maybe this change is only in certain areas in the country?  Maybe it's a money saving tactic because of all the government cuts?  Don't accept it!  Good luckSmile

  • Hi PTM

    My boy was diagnosed with autism (I also), here is an overview how. Born underweight, big beautiful wide brown eyes, problems with language and understanding (referred to child speech therapy), always not well with cold/flu's and referred to hospital(could not find anything wrong), freezing up in nursery(playschool), totally obsessed by Dr.Who and lining up things, especially cars. The nursery(playschool) brought in support worker assist to work with him one on one especially on language, a child psychologist(connected to the primary school so was the nursery)/nursery observed him and they both did a report on his lack of development. This was for primary school purposes, the psychologist said that they have to wait until he is starting primary school to see if he develops more meantime. So what they seem to be doing is making there formal RED LINE, at the start off primary school. There must be more of an obligation on the state then. I felt a lot of time was wasted pre-school and brought frustration, but I was glad with the one to one support for him at nursery and at the school as well.

    How about calling a meeting, like I did,, with primary school teacher, child psychologist, nursery(playschool manager), assist supportworker and the parents(yourself of course), to discuss, they should be doing at least 6 month reviews anyway. You have to find an environment which works for your children, I think it is a delayed diagnosis because the government does not like to commit itself, but as you know diagnosis pre 3 or post 3 year old is benchmark between mild or severe autism. Seems they are drawing the line at mild autism and hoping it levels out in time, so they can assess the autism at circa 4 to 5 were it is clearer to compare with peers of that same age.

    It is cop out on there part.

    Hope things work out okay.. and you get good assistance and advice.

    Call a meeting with the key people, don't let them off the hook. Yell If you son still has speech delay, he should be getting one to one assist now !!!!!!!!