Time Frame for Diagnosis

[zeldasmum]

Hi all

I am new to the forum so I apologize in advance for any errors in post.

 

I am just wondering on average how long it took to get a diagnosis form initial referral?

 

I have an appointment next Tue with the community paed.

 

I am pretty sure my son has Aspergers.

 

As a baby he was fine until he was about seven months old, he then started to scream and throw himself back arching his back. Nursery suggested that there may be something wrong with his spine and that he was crying in pain. Had that checked out nothing found. by the time he was one he was headbanging and atacking me, Biting and pinching. He was slow with his milestones. Things gradually got worse as he got to the age of two he would punch, headbutt, bite and if I put him down he would try to hurt himself through headbanging. He would wake up at 1.00 am every night without fail and scream the house down if I tried to comfort him again he would attack me, it sounds daft but it was like he had superhuman strength. He wouldn't play any games with me he would just line his trains up or get all the blue lego blocks and line them up. At playgroup he wouldnt allow any child to touch the train set and also headbanged and screamed when he was there. He also hated it if I joined in with the nursey rhymes he wouldn't join in himself but as long as I didn't join in he would ignore them.

 

Eventually after a holiday in which he attacked me for the full two hour flight and I looked like I had been beat up, It was the most humiliating experiance of my life I sought help, the health vis came out and observed us for a couple of hours. She basically said I was pandering to him and to let him headbang rather than pick him up and be attacked as he wouldn't do it hard enough to hurt himself. After a couple of weeks this seemed to work. Strangely he went from a child who showed me no love or affection and was very violent to the polar opposite.

 

I was so relieved and just put it down to being awkward baby.

 

He is now six stuggles socially and is emotionally immature. He is very lonely at school and other children tend to bully him. He finds school stressfull although it has improved. Although at home his speech is understood perfectly his teachers said that they coudln't understand him and referred him to speech therapy who assessed him in an appointment and then went into school. Her assessment was that he was at the high end of the scale and well above his age for everything apart from inferential and social communication. Comments made were he tends to dominate converstion and during an assessment task he said "when is this torture going to end?" and "Just get on with it please".

 

School have commented that he has a lack of empathy for other children for example his sister had money to buy ice lollies at break and because she didn't get a blue lolly he was having a hissy fit totally unconcerned that she actually had a nose bleed.

 

He is obssessed currently with SpongeBob, and can recall every line perfectly but cannot remember simple day to day things. He is sensitive to loud noises and has a phobias about buttons and germs. There are very few foods that he will eat.

 

He is very self critical and is the only child I know who sends himself to bed. He is quirky and comes out with the most random but sidesplitting things. He loves to play chess but anything physical he struggles. He cannot pedal a bike, climb, detests PE with a passion and somehow always manages to trip over his own feet. Also I have read that walking on tip toes is common with aspergers he used to do this but over the last few months he has stopped. He has a little tic with his nose not so much sniffing as scrunching his nose up.

 

Sorry if this is a bit rambling, its a relief to get it off my chest. I could go on and on. Despite all this I wouldn't swap him or change his ways for all the diamonds in the world.

 

Thanks for reading

[justine1]

Hi

Welcome to the group

 

I did type a very long reply but the computer shut down so I will just answer your question briefly.

With Sam(age 7) it took 4 months from the time the GP made the referral to the time he got his diagnosis.It was quick because the school put lots of pressure as they had run out of resources and ideas to help him and without the dignosis they could go no furthur.The process consisted of two appts,first was just over an hour and second was just over 2 hours.

 

With Dan(age 4) it took 7mths,this is because we were first sent to a dietician,then CAMHS and finally the same place that diagnosed Sam.The process was different as he was seen by a various specialists(SALT,hearing was checked,early years team and the paed) on the one appt,it lasted about 2 hours and we got the diagnosis on the same day,however 7weeks on I am still waiting for the report!!

[Sammysnake]

Saw the paed when Beth was 5 and he said there was nothing wrong. Saw him again when she was 9 with the support of a full social and emotional checklist sent by the school prior to the meeting and a detailed letter from me describing her struggles and the support I was giving her - he diagnosed AS on the spot that time.

[zeldasmum]

Well Paed agreed that he has immature physical development and has referred to OT, Also to someone else for social & comms.

 

I felt like a real idiot recounting all his little things, bet she was thinking "what and you have only just realised that something is wrong with him" feeling very guilty because he could have neen helped before now.

[Karen A]

Well Paed agreed that he has immature physical development and has referred to OT, Also to someone else for social & comms.

 

I felt like a real idiot recounting all his little things, bet she was thinking "what and you have only just realised that something is wrong with him" feeling very guilty because he could have neen helped before now.

 

Having been here a while I can say with some certainty please don't feel guilty.

Often enough people go to professionals with a very comprehensive list and are told to come back in a year or two if things have not changed because it is too soon to tell.

 

Ben was only recognised as having possible ASD at age seven because his teacher who is a member here and has a son with AS recognised that Ben was like her son in some ways and talked to me.He was diagnosed with dyspraxia soon afterwards but was only eventually diagnosed with AS just over a year ago.

 

Ben had been at an excellent nursery and one of my best friends has a son with ASD and we had known them since before he was born.I had trained as a TA and community nurse.Now Ben is 12 it is becoming more obvious that he is different to his peers.However at the time the teacher raised the issue most people thought he was a very bright lad with a very adult vocabulary and a bit of an attitude problem at times. .....all of which are also true.

Edited September 23, 2010 by Karen A

[Sally44]

My son sounds quite similar to yours.

He did not used to attack me. He used to be okay with me. But if anyone else picked him up he behaved as if they were hurting him or he was terrified of them. For a while it even made me suspicious of my own husband!

In the end it turned out to be sensory issues and that basically when he was upset, trying to touch or hold him just made things worse.

He has had to spend time in hospital overnight because of headbanging and also vomitting due to distress about things that would not bother us. Sometimes I had no idea why he was reacting so OTT.

It did improve with age (he is now 9).

He does still vomit if he gets very excited or anxious.

 

My son's SALT scores range from 2-15. 3 is severe and around 8 is average. So there is a spiky profile, which is what children with an ASD tend to have. It means they can find it very frustrating because some things are easy or easier for them whilst other everyday things or skills are absent or very poor.

 

For a diagnosis of Aspergers the child usually has to have had normal language development up until the age of 3. However I have heard of dual diagnosis of Aspergers and Language Disorder.

 

The different between a diagnosis of AS and ASD is usually down to the language skills. There is a link between moderate/severe difficulties with language and academic achievement. Obviously if you cannot understand or express yourself in your native tongue, you are going to have problems with English per se as a subject.

 

You say your son can remember every word of Sponge Bob. My son is the same. He is like a tape recorder for the programmes and films he likes to watch. He knows every single word and he uses some of the words/phrases to put together his speech. This is called echolalia and delayed echolalia. It can range from a basic repeating back or what they hear, to a more sophisticated use of it whereby the child can appear much older and more able than they really are.

 

How was/is your son with pronouns. Can he understand sentences where there is the use of them such as "If I am inside the house and you are outside in the Garden; if you shouted my name would I be able to hear you?"

 

My son gets very confused with sentences like that. And it is now another target for him to understand sentences uses pronouns. My son answered "Yes mum I would be able to hear you." That was wrong because he was the one who shouted me and so he should have answered "No you would not be able to hear me mum". Obviously there are huge implications for this in a verbal teaching environment.

 

Also look at Semantic Pragmatic Speech Disorder and see if that sounds relevent.

 

Definately get the SALT to assess all aspects of expressive and receptive speech and also social interaction and communication skills. Don't be surprised if the results show a great deal of variance.

 

Does your son have sensory issues? Has he been referred to the Occupational Therapist? There is a long wait, but I would definately ask for it so that you are on the list.

 

How long did a diagnosis take?

It took about 4 months from the time the school referred my son to the SALT when he was 4.5 years old. When she saw him she told us to expect a diagnosis of an ASD because of his language difficulties. She referred us onto our local childrens' hospitals developmental Paediatrician and the Clinical Psychologist. They saw him twice over an 18 month period. Then they diagnosied an Autistic Spectrum Disorder. There was alot of discussion about whether he was Aspergers or ASD. In the end the language difficulties made us all agree that ASD was the most appropriate. He was finally diagnosed age 6.

Then about 6 months later we started the Statementing process (unfortunately the diagnosis if not the end, but just the beginning!).

My son received a Statement after tribunal at the end of January 2009. He was nearly 8. So the SEN process takes a long time even when you are pushing for everything to happen as soon as possible.

[Sally44]

Before anyone decides to post that Aspergers is also an ASD ....

Yes it is. There is a spectrum which ranges from Kanners Autism at one end and Aspergers at the other.

Children who do not fit the criteria for either Kanners or Aspergers are usually diagnosed with an Autistic Spectrum Disorder. Or if they don't fit all the criteria with PDD NOS.

[Jules71]

The diagnosis for our son took about 4 months from when he was first referred although we've had the ed psych involved with him since reception (he just turned 11 a couple of weeks ago), we first had him referred about 18 months ago but only got as far as meeting the mental health worker who wasn't great and didn't even meet him! Fortunately the second time round we got a different mhw and it all went pretty smoothly. Good luck

[zeldasmum]

Thanks for replies.

Feeling much more positive now.

Sally 44, The paed has referred him to OT as his gross motor skills were immature.

Semantic Pragmatic Speech Disorder - this sounds similar to the description of HFA. As he had speech delay I am assuming then AS wouldn't be dx but HFA. I The criteria for dx of AS or ASD routine & Sameness doesnt seem to apply to my son, although we do obviously follow set routines if things are changed it doesn't really bother him and this seems to be an important criteria.

Although he was agressive as a Baby & Toddler he is the polar opposite now. He is loving to the point of obsession with me now. He needs hugs constantly and one of his reasons why he shoudn't go to school is because he can't hug me all day. I am not allowed kisses though but I think this may be due to his thing about germs.

I read the question about hearing me if I was in the garden and he understand and answered correctly?? He deffo takes things literaly though. We were reading Dr Seuss (the only fiction book he likes) I said "my tongue is in a knot" and he replied "Really let me see" Someone out of his class had gone to Bulgaria and he asked why anyone would want to go on holiday were there are bugs. I said what do you mean, he looked at me with disgust and said " A Bug area"

thanks x