Now what?

[rocketgob]

Well its taken me ages to actually post this cos I still can't believe it myself but Charlie did his 6 weeks assessments etc etc - we saw clinical psychologist, speech therapist, occupational therapist, physiotherapist, opthamologist etc etc and the results are that they feel that "a diagnosis of autism is inappropriate at this time" - his speech and understanding came out at 3 years 11 months and he is 3 years 4 months, his physical assessment he came out as rising 5's (no surprise he climbs like a monkey). The paediatrician knows something is not right but doesn't know what and the OT says he has bad sensory problems and needs therapy. They have also referred him to CAMHS and told the . They say that everything points to HFA apart from his speech and understanding. Am I misunderstanding something here because I thought it was not uncommon for HFA to have good speech and understanding. My husband argued at the meeting that all the tests were carried out in a controlled environment and he was totally different there to at home. In the meantime we are left dealing with an agressive destructive 3 year old who we are really struggling with and is tearing our family apart and nobody can tell us why.

 

Sorry read this back and it sounds really moany and whingy ... I apologise for that, I guess I just needed to say how I feel.

[jo jones]

rocketgob,i know exactly how u are feeling,,we been there and they still say he hasnt an asd??? but all the tests were done also in controlled and structured environments ,,the psych told me look at him he has good eye contact!!!!! and he is playin nice there??????? of course he was going to play nice with the different toys that she had given him??? when i said about individuality and that no 2 people were textbook,,,she accused me of lookin for it cos i work in autism???? silly woman when u know and see these things everyday in your own child and yet they see them for half hour,dont they just know it all eh??? if they saw him at home they would be totally different with their views,,,,,, but there u go they know best innit,,,,,,,,,,, not! but keep pushing as i have won the first battle as i said he had sensory issues all along and only now do they agree,,, so u have to keep fighting cos we as parents know our kids best, and no need for apologies,,, jo

[bikemad]

Thats my feelings exactly how can they tell how a kid is by an hour appointment in a controlled setting...they dont live with the kids!!!

[JsMum]

we saw clinical psychologist, speech therapist, occupational therapist, physiotherapist, opthamologist etc etc and the results are that they feel that "a diagnosis of autism is inappropriate at this time"

 

I fear that the future more and more childrens parents will hear this sentence, Its because they know it will cost money in each resource, that is why, its all about funding, it is certainly not about meeting the childs needs.

 

I would get them to write a report however as it is still evidence that he has difficulties, especially sensory difficulties, he will require support especially at nursery, and yes children are defo different at home, many of us know that one.

 

I feel, hear, your frustration, I persoanlly would seek further assessment privately if you require urgent support, though understand this may cost money.

 

I went to a developmental centre ran independant who gave us a full programme with sensory, behaviour and just basically been there for us.

 

Its absaloutly disgusting, the system is failing to meet the needs of Children.

 

JsMum

[Karen A]

Well its taken me ages to actually post this cos I still can't believe it myself but Charlie did his 6 weeks assessments etc etc - we saw clinical psychologist, speech therapist, occupational therapist, physiotherapist, opthamologist etc etc and the results are that they feel that "a diagnosis of autism is inappropriate at this time" - his speech and understanding came out at 3 years 11 months and he is 3 years 4 months, his physical assessment he came out as rising 5's (no surprise he climbs like a monkey). The paediatrician knows something is not right but doesn't know what and the OT says he has bad sensory problems and needs therapy. They have also referred him to CAMHS and told the . They say that everything points to HFA apart from his speech and understanding. Am I misunderstanding something here because I thought it was not uncommon for HFA to have good speech and understanding. My husband argued at the meeting that all the tests were carried out in a controlled environment and he was totally different there to at home. In the meantime we are left dealing with an agressive destructive 3 year old who we are really struggling with and is tearing our family apart and nobody can tell us why.

 

Sorry read this back and it sounds really moany and whingy ... I apologise for that, I guess I just needed to say how I feel.

 

Sorry you do not have a clear answer after all of the assessments.

Children with AS can have advanced speech.Ben had the vocabulary of a 16 year old at age 7.It does not rule out ASD but it may be that the paediatrician and Camhs may need to monitor how Charlie develops before they are able to reach a firm conclusion.

It is three years since Ben was first assessed.We are expecting a final assessment [3DI] in September but it has been a long process.We have excellent ongoing support from Camhs.We actually have more support than many people with children who have a clear Dx.It can just take time for even a very experienced paediatrician to make a clear Dx.

It is positive that the need for OT and referal to Camhs have been recognised and I think it is worth pushing to make sure that those things are followed up.

It also sounds as though the paediatrician has not ruled out ASD but just does not feel able to make a clear decision.

I am sure others here will correct me if I am mistaken. However I think that while children with ASD may be diagnosed earlier 3 years 4 months is fairly early for a Diagnosis of AS where there is no obvious speech delay.

One other option that might be worth investigating is whether there is another specialist ASD assessment team in your area who would accept a referal for a second opinion.I am guessing that the paediatrician was part of the Child Development Team.Karen.

[rocketgob]

Thanks so much for all your replies - its good to know that someone understands where we are coming from on this!

 

I think the biggest problem I had with it all is the clinical psychologist sitting there and saying that he is the way he is because of what has happened during his life time within the "family unit" - I had PND which was picked up when he was about 9 months old, my husband lost a job, and we moved house. Well we have 3 other children and they don't behave the way Charlie does! At the final meeting she made me feel like everything was my fault!!

 

I just hope that we do get somewhere with the referrals - I don't know what is happening with CAHMS but I do know he is number 8 on the waiting list for sensory therapy.

[wasuup]

My sons speech and language has been assessed initially in the development check as being 30 months. Hes seems to have signs of SPD & Hyperlexia from what I have read so far. He is also behind by about 18 months in other areas. He is 4.3 years now.

We are quite lucky as he is a really happy boy most of the time at home unless he is paddying. He does run around the room a lot of the time in circles or spin if he is not on the computer but would rather have that the problems our daughters anxiety bring with her behaviour.

You are not moany at all and how you are feeling is only natural. Good Luck and keep posting about how you are getting on. <'>

[Diane]

They say that everything points to HFA apart from his speech and understanding. Am I misunderstanding something here because I thought it was not uncommon for HFA to have good speech and understanding.

 

Hi

 

My son is now 14 and was diagnosed in October 2007.(1 year from first appointment with CAMHS) His diagnosis was made on evidence gathered by his Clinical Psychologist and the 3DI assessment. He is high functioning. When he was 3 his language development fell on the cusp between slow and delayed. He used to confuse his pronouns and never used conversation just to be sociable or to refer to himself. He can give the appearance of understanding what it is he is talking about or relating to but this is not always the case. Even now I think he has understood because of his response and it is not until he kicks off that I know he has not, this can happen immediately or hours or days later. When they did a theory of mind assessment on him recently he did extremely well (controlled environment) but when he is in a social setting and feeling anxious his theory of mind abilities go out of the window.

 

Our son was physically demanding and destructive when he was in his pre-school years and it put a huge strain on us as a family. I just want to say I understand and I know how rotten it can be at times. As he matured and was able to make sense of what was happening in his life he did calm down although he still has his moments.

 

It sounds as if CAMHS need more evidence of his language abilities before they can say that it is ASD. I hope that CAMHS can help you. They have been a life line for us and wonderfully supportive.

[Karen A]

Thanks so much for all your replies - its good to know that someone understands where we are coming from on this!

 

I think the biggest problem I had with it all is the clinical psychologist sitting there and saying that he is the way he is because of what has happened during his life time within the "family unit" - I had PND which was picked up when he was about 9 months old, my husband lost a job, and we moved house. Well we have 3 other children and they don't behave the way Charlie does! At the final meeting she made me feel like everything was my fault!!

 

I just hope that we do get somewhere with the referrals - I don't know what is happening with CAHMS but I do know he is number 8 on the waiting list for sensory therapy.

 

<'> <'>

Please do not feel bad about the opinion of the psychologist.Charlie's difficulties may or may not be related to your PND.Even if PND does turn out to be a factor it is not your fault any more than if you had had a physical illness.It does make assessment more complicated though.

I had a period of being mentally unwell when Ben was very young and it was also an issue that has made assessment for Ben more complicated.So I do understand it is a difficult situation for you. Karen.

[westie]

Hi, sorry they reached the conclusion they have, the team who assessed my kids were similarly qualified, but as well as the appointments at the hospital they also came to see him at home, at the childminders and at the playgroup he attends. I cannot understand why they do not always do this in all areas as it seems logical step to me...