New to ASD

My daughter aged 10 was diagnosed with ASD it’s been a very long journey, she is selective mute so only talks at home and cheer classes (her safe happy places), her learning has been affected and she’s working below her age.

Its been a mixed bag of emotion today and although I’m starting to get my head round things there’s still a lot to take in and then the fact my daughter is 10 she understands a lot more of what is going on, I’ve explained to her in the best way that I can that she is still the same person and this diagnosis doesn’t change things and any questions she has I will answer as best I can but that I’m still learning so sometimes I may need help.

would love to talk to parents in similar situations and parents who are knowledgeable and can offer any advice 

  • Hi - one way you might explain to her is that she's exactly the same as all the other kids but, just like some kids don't see too well and other can't run very fast, she won't be able to handle stress and changes very well - and your job as a parent is to help her with stress and understanding all the changes around her - tell her it's a team effort to get her through school and you'll always be there for her.

    Try to make sure her home life is not chaotic - try to build as much logic and predictability in to the home routines to counterbalance the blinding chaos of the outside world.

    As a parent, you'll need to understand that her world will get more & more complicated and stressful in the next few years with school changes and puberty.

    The puberty thing will be worst for her from a social point of view - the hormones will mess with her and as all her friends and peer group start to change, their social interaction will get much more complicated and difficult.  This is where she'll need lots of support from you and an understanding that she can talk it all over with you. 

    As girls grow up, the can be horrible to each other - you need to be her rock of predictability and reason - and you might need to explain to her why her friends are changing and talking to her one day and not the next - they are all testing their social manipulation skills on each other.  She will need a strong personality to be able to shrug this off as they can be nery hurtful - especially if they detect a weakness.

    She will likely start to become very tired and stressed coming home from school so her interaction with you will probably be difficult until she's decompressed from the day - she'll need a bit of quiet time or you're just asking for her to blow up at you to vent the stress.  Weekends will be very important down time for her.

  • Hi NAS62155,

    You may find the following page our website useful:https://www.autism.org.uk/about/diagnosis/children/recently-diagnosed.aspx

    Post-diagnosis can be a very nervous time for any parent, but we're here to help you. In this link you can find information on the effects on your family, getting some practical support as well as telling your child about their diagnosis.

    If you have any other questions, or wanted some advice, you may like to contact our Autism Helpline team. They can provide you with information and advice on your issue. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm).Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor.

    You may like to contact our Parent to Parent service who offers emotional support to parents and carers of children or adults with autism. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism . You contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends.  Alternatively you can use contact the team via web form: https://www.autism.org.uk/services/helplines/parent-to-parent/enquiry.aspx.  You can find more information about the service here: https://www.autism.org.uk/services/helplines/parent-to-parent.aspx

    I hope that helps.

    Regards,

    Kerri-Mod

  • I had both my daughters diagnosed, one at 7, the other at 9, so been there twice. It is always a long protracted journey and the diagnosis comes as a climax, usually as a relief, an explanation that opens the door to the right support. So this is roughly the message I conveyed to the girls.  I used this journey to explain the diagnosis.

    They were already aware of their problems with school tasks, with sensory processing, with peers and bullying. So throughout I was explaining to them that they are  different, they are special in that their brain works differently so they need a little or a lot of help and advice on how best to use their brains so they could do anything and achieve everything they set out to do.

    So when the diagnosis came I presented it as an explanation of how their brain works and why do they have all those struggles and how this helps the school and us to better help them. I always emphasized that it doesn't mean they are not good at things and can't do stuff, but that they need to do it differently, so the first thing is to understand how exactly and then to tell the school to enable them to function in a way that works for them. In their case it meant they need an LSA to support them 1:1 to see in the moment what different help they need. So, I told them the diagnosis is the key to unlock your understanding and control of the condition, the difference they have. So now they need to grab that and learn to use it in order to be the best they can be, to achieve their goals. I also explained that being different is not always easy, it could put them at a disadvantage, but the diagnosis provides them with some rights to mitigate this disadvantage, to have reasonable adjustments to enable them to do things in a way that works for them. That we will continue to support them so that they have their needs met, that the school gives them the right support and that they could have the equal opportunities in life.

    Basically, at the age of 10 you can and in my view need to tackle topics such as special needs, disability, equality of opportunity and equality rights, reasonable adjustments, bullying, identity. Up to this time they were under pressure and their self esteem and confidence, their social standing eroded by their seeming 'failings'. So it is essential to roll that back, to redress their sense of self. You need to help them start pushing back and delimiting, owning  their identity and sense of self as a valid but different, with rights and equal opportunity, for whom the sky's the limit, but they will get there differently 

    At school, as part of EHCP provisions we had an ASD specialist teacher to also explore and explain autism to my daughter and at a later stage to her peers. I took the view, and so did the specialist teacher that it is empowering when the girls integrate their autism as part of their identity, something they own as a positive and can talk assertively about. The process that lead to the dx is damaging for the confidence and self esteem. Owning the diagnosis  goes some way to restore that in my experience. It is liberating and empowering. It could be oppressive and psychologically damaging on the other hand to feel defensive and awkward about it. The peers would  know that anyway from the support and how teachers would treat her. I asked the school to use the presentation of her autism to peers to kick start a buddy and mentoring support, so some girls in class would act to support her. IThe school also established a very clear inclusion and anti bullying policy. It was already in place, the school had strong pastoral support and good behaviour policy. My daughter was the first girl to have autism and to have an EHCP in that school, so they introduced a strong policy of inclusion and no tolerance to bullying and harassment. So the peers were enforcing this policy amongst themselves. If somebody would start triggering my daughter, they would call out on that and ask to stop. That was very empowering and good for my daughter's self esteem.

    I also used this video with my younger daughter. The way that the girls are confident and articulate is remarkable.

    https://www.youtube.com/watch?v=oZhZ0k1lyF8