Still no diagnosis (ASD)

[pinkpolkadot]

Hi all!

We went for our appointment today to go through all the findings from various settings and professionals but the Dr is still unsure if DD is on the spectrum. On the upside it means her issues are quite subtle but downside is it leaves us hanging and not knowing.

We will be getting together again after Christmas for another review and have some charities and websites to look at in the meantime for support but y'know it feels a bit weird going to them without a DX.

In a way it is not overly important to us to have a DX but I feel we can't get on and help her in the appropriate way if we don't know

 

[PresqueVu]

In limbo here too, waiting on an appointment in march although I doubt that'll be conclusive either. If it helps the way we discussed it was that it's more about finding the right strategies to help the child - it doesn't matter so much where those resources come from.

Are you finding things that help support her (and you)?

 

[Misstrouble19]

i am waiting to see child development centre too i want to see if my little boy is on the spectrum as its a huge one, keeps reapeating phrases echoliac about 20 times a day no matter if i answer him or not and lines toys up etc and sometimes goes round in circles xx

 

[pinkpolkadot]

In limbo here too, waiting on an appointment in march although I doubt that'll be conclusive either. If it helps the way we discussed it was that it's more about finding the right strategies to help the child - it doesn't matter so much where those resources come from.

Are you finding things that help support her (and you)?

Sorry you are in the same boat! Yes I agree, I just want to know how to help her. She has a lovely lady coming to work with her at pre school and I have contacted a local charity today who can offer advice apparently so hopefully we can get started as we have just been winging it up until now really!

 

[pinkpolkadot]

i am waiting to see child development centre too i want to see if my little boy is on the spectrum as its a huge one, keeps reapeating phrases echoliac about 20 times a day no matter if i answer him or not and lines toys up etc and sometimes goes round in circles xx

DD has echolalia too but it has lessened the lat few weeks. The speech therapist said it is not necessarily a sign of ASD but it can be. She also sometimes lines up toys and runs in circles but the Dr didn't seem concerned about that. I found the Dr was more interested in her imaginative play and social interaction, she lacks skills in both areas so they have given her a DX of 'possible' at the moment.

 

[annanouska]

The best advice I would give is to treat her like she has the dx of asd now. By that I mean research tricks of the trade and implement them. For example visual timetables, working on small communication Groups of 1/2 people, play therapy around imaginative play, sensory sessions etc. obv it's a very wide spectrum and depends where the difficulties are as to what help to try.

At least this was if she is asd you are ahead of the game if she is not the. You are finding techniques to help. My son does not have asd label yet but shares significant amounts of traits due to his epilepsy and genetic issues. I found by implementing the techniques he was a lot better.

We are very slowly getting. Better at social things and have seen improvement in play x

 

[pinkpolkadot]

The best advice I would give is to treat her like she has the dx of asd now. By that I mean research tricks of the trade and implement them. For example visual timetables, working on small communication Groups of 1/2 people, play therapy around imaginative play, sensory sessions etc. obv it's a very wide spectrum and depends where the difficulties are as to what help to try.

At least this was if she is asd you are ahead of the game if she is not the. You are finding techniques to help. My son does not have asd label yet but shares significant amounts of traits due to his epilepsy and genetic issues. I found by implementing the techniques he was a lot better.

We are very slowly getting. Better at social things and have seen improvement in play x

Thank you! Do you implement these yourself for example the play therapy or do you get help to do this? Imaginative play is an area where she lacks skills.

 

[PresqueVu]

Great advice from annanouska, would agree

Play therapy is something the school started and that has made a significant different in reducing the violent episodes. Social stories help my boy and we've done a lot of work talking about emotions, this book has been very handy: All kinds of feelings. Emotions, sensory and self-care are where he needs more support.

It's been a lot of meetings about the school/professionals/us all working together to make sure we are consistent and sharing ideas. Very shaky start but we ended on a positive note, all fingers crossed for the next school year!

For imaginative play, will she make her own stories up or have an answer if you ask her what she thinks might happen next from her favourite book?

 

[pinkpolkadot]

Great advice from annanouska, would agree

Play therapy is something the school started and that has made a significant different in reducing the violent episodes. Social stories help my boy and we've done a lot of work talking about emotions, this book has been very handy: All kinds of feelings. Emotions, sensory and self-care are where he needs more support.

It's been a lot of meetings about the school/professionals/us all working together to make sure we are consistent and sharing ideas. Very shaky start but we ended on a positive note, all fingers crossed for the next school year!

For imaginative play, will she make her own stories up or have an answer if you ask her what she thinks might happen next from her favourite book?

Thank you! We have briefly met the lady from the local Autism and Social Comms team who is going to help Betsey at preschool and she seems really nice, I think maybe she will be able to help us with this stuff. She is coming tomorrow so will grill her

She is going to the primary school preschool in September, her old preschool were very good when it came to spotting the flags but the communication between us and them was not great, usually a short exchange at pick up time instead of proper meetings. They were also a bit slow at sending off forms and things like that. Hope the new school will be better on that front!

I will check out that book, thank you She does like imaginative play and she will initiate it sometimes and will make up stories but it is very limited and repetitive, the Dr actually picked this up in the short time we were there and I hadn't seen it (or maybe just not thought it unusual) before. I will try asking her what might happen next in her books, I am not sure about that!

 

[Eve]

It took years for us to have a diagnosis for my son, and even now it's not fully finished for us... He has Aspergers, ODD, OCD and a mood disorder. They believe he has bipolar disorder but a proper diagnosis for that isn't done until adulthood I guess. I believed he was on the spectrum from a young age (he's almost 13 now) but without the actual diagnosis, getting him help in school was hell. I agree with treating it like ASD now and doing what you can do in that aspect for your LO until you get the diagnosis you need for certain help and program availability.

 

[annanouska]

my son was 3 in July if I asked him what happened next in a story he would deff nit be able to answer! His speech is miles better but still struggles. His imaginative play has come on lots but it's still mainly reciting fireman same but he will do things like put the little people in and out the car which he never used to. We did have a helper for play therapy but it was pointless just keep trying making a game like dressing up bears or dollies play tea party etc

 

[PresqueVu]

my son was 3 in July if I asked him what happened next in a story he would deff nit be able to answer!

Not meaning to worry, it's not so much about if they can answer or not but to get them thinking in those directions a bit more, I think

 

[Starry Night]

My son just turned 4 and he still struggles answering questions like that but there is some improvement. It just takes time and repetition. And giving them time to answer. That's where I struggle. When he doesn't get an answer right away I'm so quick to jump in and tell him. I need to give him time to process.

I think playing with your kids is really one of the biggest things. I've always played with my kid and did interactive reading (pointing things out, asking what he liked, etc) and our therapist recently told us that my son is as far along as he is because of that. Really validating because I had way too many people suggest that his delays were because I didn't talk to him enough, read to him enough, play with him enough, etc. I felt like I was beating my brains out trying to teach him so it made me so confused. What was "enough" then????

We were very lucky in that we got the diagnosis relatively quickly. It helps when it's the doctor who catches it and then refers them, I guess.

 

[Thurinius]

I've seen improvement also in my son. Today we are going to a farm and I asked him what animal he wanted to see and he said 'pigs' with no prompting.
I then asked what colour are pigs and he replied "green" and then started laughing.

 

[Eve]

^awe!