Can i ask what is the best way to get a diagnosis?

[shaz71]

Hi i know you will be all fed up of me writing but the health visitor rung up today and is sending me on an intensive course on how to deal with behaviour issues as obviously i have some with Melissa the daughter who i think may be on the spectrum and also for my younger daughter. It is with the 0-16yrs mental health but i know this isn't going to get my daughter diagnosed. I haven't actually said my thoughts about her being on the spectrum, how did you go about it or were you all lucky and they picked it up, i don't think they pick anything up at this school where my daughter goes as i know a few mums who have fought real hard just to get extra help and that is with a diagnosis in place so i know it isn't the best school for support of anything like this. Would i be best to just come out with what i suspect that she may have or will they think i am a neurotic mum labelling her kid. I just don't know what to do all the facts are there in there face but it is like they need the word to fix the puzzle together, the more i look at the symptoms and traits the more i am suspecting she is on the spectrum and that would explain to a lot of people the weird ways she has they would perhaps be more understanding other than the labels that they give her now, spoilt brat, immature, in her own world, not getting her own way, its just Melissa and various others i can't remember off the top of my head. I just feel like giving up as i feel like i am banging my head against a wall, like no one is getting the picture without me literally spelling it out to them. How did it happen for you? Sharon x

[lisa91105]

to tell you the truth,..... id start with the school. thats the second place she is at most. set up meetings with teachers, try to talk to her friends, gather as much info as you can from wherever you can. that way, when you go to the doctor you have all of you stuff together, and everything you want to discuss is validated.----lis

p.s. dont let them tell you its nothing, or its just a phase. ask for a referral and get another opinion. get more then 2 if you can. the more people you talk to the more insight you'll have.

[Sally44]

Yes, our children are normal to us and within our families where there maybe similar traits as well.  I also have sensory issues, and my son appears relatively 'normal' to me.  But in groups of other children he sticks out.  I can see the difference.  I recognise that it is part of autism/sensory/speech/social difficulties.
Sometimes, I see other children and especially if they are being nasty to other children etc, I think I am lucky to have a child that won't do alot of those types of things.  And those so called 'normal' children seem alien to me.  Sometimes when my son has a friend over to play, I am counting the minutes for their mother to come and get them!  That I think is typical of all families.

[shaz71]

Hi thanks again Sally for all that info, I will phone her on Monday and put up this page to remind me what to say. My youngest daughter even though she is only coming up to 2 is very forward for her age but she tiptoes all over the place especially when she has no shoes on but sometimes does it when she has shoes on, she also flaps her hands, she hates getting dressed and screams and carries on in fact it is a nightmare, my eldest dd used to undress as soon as i dressed her, and like Melissa always took shoes and socks off if got a chance, but Lisa was awful she didn't tantrum as such but she was a dog literally she would sniff things people and even lick them it was really embarassing, she was like that up until the age of about 7 she even licked her dinner off the plate like a dog and lapped up her milk or drink from a bowl, she is very immature for her age also she likes adults more and then she used to play with younger kids like age 7-8 when 12 but it is winter and she doesn't go out at all. I just keep thinking maybe it is just my childrens ways and that it is society that needs to change they are normal to me, just other ignorant people that don't understand. Sharon x

[Sally44]

The SALT that saw my son could refer to a 'communication clinic' where there were all the professionals that diagnosis for being on the spectrum.  She also told me after the initial assessments that the kind of speech disorder that my son has is typical of being on the spectrum.  She also played a bit with my son to see his reaction and interaction skills, and told me that I should expect to get a diagnosis of an autistic spectrum disorder.  That was the diagnosis he got, but it took another 18 months of professionals at the communication clinic observing him.
Don't be afraid to mention disorders, if your child hasn't got it, then they won't get a diagnosis.  But there are so many different things out there, that if you wait for the GP to raise the issue of a referal that might take a long time and it might not even be to a relevant professional.
Regarding tip toeing.  That is just one of many sensory behaviours.  No child is going to have all of them.  My son never tip toed.  He used to spin as a toddler.  He rarely hand flaps.  He does like to bounce.  Bouncing and climbing, or being totally over active can also be sensory autistic behaviours.  Then other children, like my son, might be very sedentry.  
Telephone your SALT and tell her your concerns about being on the spectrum and ask her outright that as well as observing her in school, is she going to test for her social interaction skills, and receptive language skills as well as auditory processing and auditory memory skills?  Ask her if she can refer to other professionals experienced in autistic spectrum disorders or whether you need to go to your GP for a referal.

[shaz71]

Hi thanks for that, i have just done a pdd assessment on www.childbrain.com Melissa scored 149/240 it gave her moderate pdd. She doesn't tiptoe but it is how she is with people that is the give away and her weird obsessions and how she can behave mainly when she is in crowds. We didn't go out yesterday due to severe weather conditions she did play in the garden for a little while but no crowds or people and do you know something she was as  good as gold, no tantrums, until she went to bed that is but no defiance no playing up no hyperness, so it must be all connected to large groups or lots of noise, one of the two. Thanks again. Sharon x

[Bayoubaby1]

Very well said, Sally.  Here is what I did...my DS was refereed to another doctor because of some behavior that was seen at the clinic when we were there for an asthma check-up.  We were told that he appeared to have ODD and should be seen by the guy ho specializes with that sort of thing.  When we went back to see the other doctor I had sone some research and I brought in a checklist for Sensory Processing Disorders bcause it said so much about my DS.  Well, the docotr was very nice and glad that I brought the information, said that nothing about my child "screamed" autism, but that he could have some type of PDD based on the information that I provided.  We are still in the process of getting a formal diagnosis but we were given a lot of questionnaires to fill out and bring back and we were referred to an autism clinic in NOLA for a "spectrum diagnosis".  I hope that you get some answers soon.  Don't be afraid to ask questions.

[shaz71]

Thanks for that i was just a bit scared as to say it out right as i didn't want them thinking that i am a neurotic mum. She is still to be assessed at school to see how she does with her expressive speech and understanding, i think that is it, the salt noticed she was in her own world in the half hour she was there. Could the salt do a referral if i asked her to or would it definately have to be the gp? Thanks again for replying. Sharon x

[Sally44]

Many people do need to go to their doctor and say " I think my child is on the autistic spectrum because of X, Y and Z.  I want you to refer to me a multi disciplinary team that specialises in diagnosing autism".  If you don't lay it on the line and ask, then you could spend years being referred all over the place for things that are irrelevant.  Afterall the GP may have some knowledge of autism, or he may have none at all and won't recognise the symptoms himself.  If you ask for your daughter to be assessed for autism/aspergers/ADHD, then the GP has to refer unless he has a good reason not to.  If you don't ask you won't get.  
Once you have been referred, if it isn't autism, your daughter won't get a diagnosis, and they should also have advice for your and your doctor about where else you should be referred to.  Both autism/aspergers and ADHD can cause 'behavioural problems', but no amount of 'family counseling' is going to address those difficulties because that is not the cause.  Once you know the 'reason' for the behaviour (whether you get a diagnosis of not), then training in behavioural methods may well be appropriate.  But that is not the first stage.  
I would also recommend phoning the National Autistic Society and speaking to their advisors about the best way forward.