Unmasking aged 8

I think many autistic children are put under tremendous pressure by being in school - they try to cope but there can come a point where they can’t maintain it anymore. I remember a few months after my youngest first started school he started tearing up paper into  tiny pieces. Then he drew a picture of his teacher being attacked by countless tiny mice! So the signs are there - you just have to be alert to the changes in behaviour that indicate they are in distress. 

Hi  

I hope you are doing okay. Your post stood out to me as it sounds very similar to what I’m currently going through with my daughter age 9 and I’m finding it very overwhelming and scary as I try to navigate this new period. As am sure my daughter is too.

I never thought about the current difficulties we are experiencing as unmasking but I think this could be the reason for the sudden changes that seem to have come out of no where e.g. she’s always been able to wear socks, although it has been a struggle in the past, and since the last 4 months it’s too much. Like you my daughter is also now finding it very difficult to leave me.

I just wanted to share my current situation so you may feel less alone. X

Hi, it is a lot to deal with when it starts to dawn on us that a child has a significant issue like autism. When this happened with us I knew so little about autism - looking back now (both my children are in their 20s now) I can remember feeling quite desperate at times as I tried to navigate dealing with school and trying to get help for my youngest son. He developed Selective Mutism when he started primary school - but wasn’t diagnosed with autism til he was 10 years old. 
It can feel overwhelming. I think the key thing to keep focus on is listening to you child - tuning in to their experience and what they are saying they need to help them to cope with school. School life can be incredibly challenging for autistic children - it’s so intense: so many people, so many pressures and demands on you, so much sensory input. This can put an immense strain on your child’s mental health (and consequently a lot of strain on your mental health too). 
I would say: concentrate on what is good for your child’s mental health and happiness TODAY. Try not to get too caught up on looking ahead to what your daughters life will be like in the future - because you have absolutely no idea about that whatsoever  it’s pointless to dwell on that now and it’s only adding to your stress. It’s not helping you or your daughter to start engaging in that. Focusing on her health and happiness now is the concrete thing you can do now that will ultimately improve her future anyway. 
If it’s any comfort both my children were eventually diagnosed with autism, one is now doing a PHD and one struggled academically - so every person with autism is different and predicting their future life and achievements is not something you need to do at this point. Both my children are an absolute joy to be around and I am so incredibly proud of both of them. I wouldn’t ’take away’ their autism if I could - because it’s an intrinsic part of who they are - and I love who they are! Embrace your daughter’s autism diagnosis - because it’s a big part who she is. Don’t waste time and energy ‘grieving’ - celebrate your daughter on every level of who she is. She’s facing a lot of challenges in coping with school - I can’t overstate that enough - so be proud of her for trying to do that, because trust me it can take an immense amount of courage and strength for an autistic child to get through the school day. It’s hard and im sure she’s being really brave to face that every day. She needs you support and unconditional love for her to be able to navigate all she is having to cope with now. Mainstream schools are not well designed for autistic pupils. She needs you. Drop all your expectations of what ‘a wonderful life’ (as you put it) might be for your daughter - no one’s life is always wonderful after all! Just focus on her day to day happiness now :) 

Dear Butterfly84,

Thank you for posting to the Online Community. We can see that other Online Community users have signposted you to useful resources. 

It may be in your interest to look at The Parent to Parent Emotional Support Service. This service provides emotional support to parents and carers regarding their autistic children/grown-up children. The service is provided by trained volunteers with personal experience as the parent of an autistic child or adult. Our focus is on emotional support and understanding what it is like for you as a parent. We offer empathy, understanding, and a safe space to talk through your feelings and experiences. To request a call, complete a web enquiry form here: https://www.autism.org.uk/advice-and-guidance/help-and-support/parent-to-parent-helpline 

Kind Regards,

Rosie Mod 

Hi and welcome to the community.

I’m so sorry that the first reply you received here was so critical (including in its edited version, with this added final sentence):

Unknown said:

Yeah it does (sound awful).   

I am not sure that coming to a forum full of Autistic people & speaking of your grief was altogether wise.   It has the potential to make some of us here feel less than adequate. 

I do appreciate you are going through an emotional time, but I wish to assure you that Autism does not mean that the future is bleak.

This forum is open to all, including parents and carers of autistic children. You should feel free to discuss your feelings openly, without fear of being reprimanded by another member for sharing them.

Grieving is far from uncommon as a reaction to an autism diagnosis / realisation. My own reactions, as a late-diagnosed adult, have included both backward- and forward-looking grief.

Parents can, naturally, also feel similarly in respect of their child’s diagnosis, so please don’t be hard on yourself about it, or about sharing how you feel.

For example, a few years ago, a BBC drama called “The A Word” explored the experiences of parents of autistic children. The writers were advised by Tom Purser - then of the National Autistic Society, now the CEO of the Autism Centre of Excellence at Cambridge -  whose own son was diagnosed when a toddler. In an article discussing the programme, he explained how “My wife talks about grieving. As first-time parents your expectation about what your child is going to be like is shattered by that diagnosis.”

BBC - The relief and grief of a child being diagnosed with autism

In another example, a Psychology Today article explains how “Notwithstanding your deep love for your child, parents can experience feelings of grief, anger, fear, and stress.”

Psychology Today - Parenting a Child with Autism

As you and your daughter move through the diagnostic process, you might find the resources in the NAS's diagnosis hub helpful. They include, for example:

NAS - What can I do while waiting for an autism assessment?

NAS - Talking about and disclosing your diagnosis - which includes a section titled “When and how should I talk to my child about their diagnosis?” 

In respect of emotional support, you might find this article helpful:

NAS - Emotional support for family members after a diagnosis

Finally, you might like to request an emotional support call from the NAS’s helpline for parents: 

“The Parent to Parent Emotional Support Service provides emotional support to parents and carers regarding their autistic children/grown-up children. The service is provided by trained volunteers with personal experience as the parent of an autistic child or adult. Our focus is on emotional support and understanding what it is like for you as a parent. We offer empathy, understanding, and a safe space to talk through your feelings and experiences.”

NAS - Parent to Parent Emotional Support Helpline