How to feel after a diagnosis

[Soda]

Hi everyone,

Posted a few days ago in meet and greet and had a few replies, thank you so much.

Would still really like to hear from anyone else whose child has had an asd diagnosis. I really

thought DD would not get a diagnosis.

Will it help her in the long term?

And why am I struggling to accept it?

Thanks in advance

Soda

[Lyndalou]

Hi Soda

 

It will take a while to get used to your daughter's diagnosis but getting answers to questions while she is young can only be a good thing in my opinion. My own son's diagnosis was made just prior to his 3rd birthday and it meant that he was able to attend a Special Needs nursery who had expertise in working with children with ASD. He is now in Primary 1 at the same Special Needs school and has a very understanding teacher and a nurturing and supportive environment to learn in. For us, the diagnosis is a good thing because his sensory difficulties, his processing difficulties and his fears are understood by the school and we have been able to support him in these things at home and understand why he acts in certain ways.

 

I was very upset when my son was diagnosed. I was thinking in worst case scenarios and thought that this meant that my child would not achieve anything or have any friends. However, my little boy has proved to be talented, funny and affectionate and my perspective has shifted and I see much more of the positive than the negative with regards to how his future will be. He has friends and they may not interact like 'typical' children together but they enjoy each other's company and are happy together. What can be difficult is when my son 'plays' with other children as I would argue that 'typical' children need to be guided in how to interact with our kids as much as our kids need to learn to interact with the 'normal' people of the world. It can be very hard to watch how other children are with my son and sometimes adults too.

 

Try to focus on loving, supporting and teaching your little girl. Learn all you can and get all the support you can. Especially at the start, it's not easy but it will get easier the more you understand.

 

Lynda

[Soda]

Lynda,

Thank you so much. I am hoping that I will get my head around this quickly and feel as positive in my heart as my head tells me to be.

DD is doing so well in mainstream and does not have significant difficulties at school. Though I think if school did a bit more she would be less anxious at home and we would see less of the behaviours that some might seem as less typical.

I'm glad I have found this forum because its in listening and sharing with others who have the same worries and concerns that I might have slightly less sleepless nights myself.

Thank you for replying x

[Lyndalou]

Soda

 

Some of the behaviours that your little girl exhibits will be how she copes with the stress she experiences day to day. Some will lessen if the anxiety lessens but as you say, less 'typical' behaviours are simply part and parcel of having an ASD. Some perform a positive function, ie. they help calm the person and help them cope better and some are more destructive behaviours which need to be discouraged.

 

If your little girl is doing well at school, that is great! Academically, my son is ahead of his peers in some things and it's likely he would be in a mainstream environment too. However, he does some very 'untypical' things like often writing right to left and his speech and understanding are impaired. Like all kids with ASD, he processes information and learns differently to 'typical' children so your little girl needs teachers to undertand this and help her with any difficulties related to learning differences. This would alleviate some of the stress for her.

 

Give her lots of opportunity to unwind, have fun and do the things that make her happy. If she likes to spin, let her spin - I bought an office chair to spin my son. He loves to be tickled so he gets a good tickle.

 

Lynda

[Soda]

Thanks Lynda,

Have been giving myself a hard time for things like trying to stop her from doing these things eg. she mkaes a lot of little noises

and finds it hard to sit still.Been working on the thoery that she needs to learn to try and be seen to be as normal as possible. Now we have the dignosis am frightened I have been doing everthing wrong

She is academically doing well but like your son has some sensory issues and has problems processing information and instructions. Socially she has a few friends, but I am worried they see her as a little bit different and try to'baby' her. She is sort of on the periphery though we have had several occasions when she has come home upset because no-one would play with her. If she gets told to go away she will and that as a mum is just heartbreaking..."Mummy I spent all 3 plays on my own". I am trying to teach her what to say/ do but its here she struggles.

Thank you for sharing...I also have another DD same to yours and she is often my challenging one in terms of behaviour eg tantrums/defiance. No signs of ASD but I am now worrying there is something wrong with her too. Because I missed it in oldes DD now really doubt myself and mummy judgment.

Actually thats the hardest part of it all. Hopefully I can learn from people here.

Soda

[smileyK]

it takes time for dust to settle to get head around everything said for you as her mum to adjust to official diagnosis and set it place what is best what she needs! So take a step back look in and what youll find is common natural reaction to finding out youll experience a ramge of different emotions/feelings so dont beat yourself up be too harsh on yourself! Dont rush take your time and energy use spareling wisely good luck for you and your daughter!

[smileyK]

theres no right or wrong way to feel after being told ... Just research by informing and knowledging self more on ASD research may help towards understanding further deeper into diagnosis and your daughters everyday struggles challenge know it isnt easy take each day as it comes dont expect too much it isnt easy on youu aswell as her you are also directly involved affected by ASD everyday of your life too!rom yourself es an d life!

[Lyndalou]

Hi Soda

 

Don't beat yourself up for doing what you think is best. Now that you know that your little girl has specific difficulties, over time you will find the best ways to support her and help improve on her skills.

 

Girls with ASD can be quite different to boys with ASD but I don't know if you will have been told this. There has been a lot of discussion lately about girls and their specific problems. Those differences can often be interpreted as 'not so severe' but this is not always the case. Girls just cope differently and can be perceived differently by parents and teachers alike. The fact that your little girl is telling you about some of her problems is a VERY GOOD THING. Often children with ASD don't tell adults about the problems they are experiencing and the stress is manifested through behaviour. You are being given a window into her world when she tells you she is upset and this will be a very useful way to learn how to help her. There can be a lot of problems associated with girls having 'friends' - I put this in inverted commas because those friendships can be 'non typical'.

 

If you haven't already, I would suggest you look at literature specific to girls as well as the general ASD information. Jessica Kingsley Publishers have various books and there are a plethora of articles online.

 

Lynda

[Lyndalou]

I haven't read this but 'Parenting Girls on the Autism Spectrum' by Eileen Riley-Hall has quite good reviews

[dekra]

 

She is academically doing well but like your son has some sensory issues and has problems processing information and instructions. Socially she has a few friends, but I am worried they see her as a little bit different and try to'baby' her. She is sort of on the periphery though we have had several occasions when she has come home upset because no-one would play with her. If she gets told to go away she will and that as a mum is just heartbreaking..."Mummy I spent all 3 plays on my own". I am trying to teach her what to say/ do but its here she struggles.

 

 

Echo's of my own childhood here and it breaks my heart hearing of another little girl going through it. Hopefully her diagnosis will aid her integration and your own awareness of it also. I am pretty sure I never actually told my mum about it, I just clammed up. Be there for your daughter, you may not be able to stop all the tough times in her life but you can support her through those times.

[Soda]

Thank you all so much and /Lynda I will look that title up !

[Shnoing]

... Been working on the thoery that she needs to learn to try and be seen to be as normal as possible. ...

In the long run, this might work best. It has worked for me (age 42, dx at age 37). She'll need enough time for her "stims" in the safe environment of your home, though, to compensate for adapting at school etc.