formal assessment for autism for daughter

DRedSky

Got a big shock a couple of days back when I learned from my ex-partner that our 7 year old daughter is to go for a formal assessment for autism at the end of this year.

She had been seeing a therapist for social anxiety which I have no doubt she does suffer from. But apparently the therapist spotted a few things such as "flicking her fingers" and occasional "bouncing" and some occasional "spinning". Also she said she told her that she doesn't find it easy to fit in with other kids.

The confusing thing here is I had never seen her doing any of the above stimming behaviours. However, following the therapist flagging this my ex said she began to then notice it too, saying it was very subtle and only became aware of it after the therapist flagged it, as she was obviously watching out for it then and noticed a small amount of finger flicking and bouncing at times.

So the decision is to have a formal assessment for autism in 7 months time (private waiting list time at this clinic).

I'm absolutely shocked and never saw this coming at all. Social anxiety, yes absolutely. But not autism, it completely caught me by surprise.

Her teachers said they noticed she was "quite quiet" but nothing other than that. She's in the top handful in her class too and although I don't live with her since I moved out of the family home a year ago, I have not picked up on anything other than shyness and a slight reluctance to make eye contact from her (I'm guilty of that one myself as I'm quite shy too and had social anxiety in the past).

So it's all a bit of a shock. If indeed she actually does have autism, is it likely to impact her life much? Given that it's not overly noticeable, seeing as it took the therapist to spot it. Or does it tend to worsen with age as she becomes a teen etc? Is she likely to go on to live independently and hold down a job and maybe go to university and perhaps raise a family etc? All these questions are buzzing around in my head and I'm so sad and scared for her, but it's hard to know who to talk to about it all.

And given that we don't actually have the formal diagnosis yet it seems a long wait to hear what happens next.

As someone who suffered in the past from social anxiety I was awful with eye contact and felt very uncomfortable socially and felt tense and rigid in these social situations until I eventually worked on my socialising to overcome it. So I had hoped that would be the case for my daughter here too. But hearing that it is "probably" autism has shocked and admittedly scared me somewhat as I don't understand the condition.

I stayed up until 4am last night reading about it non-stop trying to learn more but it appears to affect so many people to so many different degrees that it's difficult to know what to think or what may lie ahead for her in terms of challenges etc....

madeiracake

It's scary when you think your child might have autism. You have all these fears for their future, will they be independent? will they be happy? but getting my daughter's assessment was the best thing I ever did. Turns out I have autism too. After the initial shock wore off we realised that it gave us a reason for the way we do things and why we react to things the way we do. My daughter just started secondary school and I was terrified of the change and how it would affect her anxiety. She took a while to settle and is flying it now. But because she has a diagnosis if she is getting stressed or overwhelmed she can take a break and get some quiet time. The challenges will be there but honestly knowing why makes it easier to deal with.

DRedSky

Wow, thank you. Thank you for replying.

I’m really glad to hear your daughter has done so well.

I’m glad for her and also for you and obviously for me as a fellow parent too as I’ve been worried sick and riddled with anxiety tbh, about my own daughter’s future.

I’m not sure if it’s ok to ask this but how did it come about that they assessed you too? Had you had some inkling yourself? Or did you just realise it yourself after your daughter’s diagnosis?

Either way, I’m glad she’s done so well and thank you for taking the time to reply.

madeiracake

I know it's so worrying. I always knew I was different . I never really fit in anywhere. Social situations were just so draining like you I would be rigid and full of anxiety.

Loud places and crowds were a nightmare. I felt like I didn't understand why people did/said things especially if their behaviour didn't match what they said. I was constantly "reading" people and presenting what I thought they wanted from me. While I like people I find them exhausting after a short time and need to go home and recharge after being out. love to be in my own company. Lots of little things. It was while my daughter was being diagnosed all of the behaviours and signs were pretty much the same as mine. One of the therapists very nicely told me that I could get a formal assessment for myself but she would be very surprised if I wasn't on the spectrum.( I had several sessions with the therapist myself). Even my daughter was saying the things she did were just like me. Excessive hand washing, germ phobia, nail biting, fidgeting etc. It just made so much sense of the things I did and how I always felt like I was behind an invisible barrier with people. Also found I was very good at noticing if people were lying and funny enough people don't like that! 😁

My son was also diagnosed but his was spotted at a much earlier age. I was panicking when he was diagnosed. I was terrified. Would he be bullied, would he be able to live an independent life? Would he happy? It was a real struggle initially but now he has far more good days than bad.

Both of mine try to be "good"during school but when they get home they need to decompress and let out any of the emotions they were struggling with during the day or situations they didn't understand. As a parent we are their safe space and we have to figure out how to be their foundation. My son shows how he feels but my daughter like me sometimes her face looks blank or really sad but she isn't.

Now if something is annoying us we say "my autism is screaming when ...."

Also I tell them both it's ok to feel angry or sad, jealous or whatever you feel. Having these feelings doesn't mean you are bad. That no one is happy all the time. The film "inside out" is very good for this.

Work with you daughter to find out what relaxes her. My son likes deep pressure, being squashed or hugged really hard, he likes messing and joking. Daughter likes soft lights and bed time talks with hot chocolate! Also she finds doing art very relaxing.

Both of them love the headspace app. Find what works for both of you. Sometimes it's just about being in the room with them. Letting them know you are there when they need you to listen.

I tell them autism isn't bad it just means our brains are wired differently and we see things differently. Not bad or worse just different. And that's ok.

DRedSky

Thanks! That’s a really lovely, touching post btw! It must have been an extraordinary moment for you when you realised you were autistic yourself too. I had been researching online and discovered people can go into adulthood undiagnosed alright but it’s really interesting to hear you actually describe it, first hand.

Like you mentioned there my fears for mine are bullying or struggling socially, mostly.

I haven’t coped at all well with the news so far but hearing you talk about your experiences with your kids it actually doesn’t sound so bad. I guess something I don’t understand can frighten me, plus not living with her makes me feel a bit helpless and frustrated even though she has a great mam who will do everything she can for her daily and i’ll be doing absolutely everything possible now too. At the mo I’m trying to learn more about it but I’m possibly obsessing about it which is a bit of a character flaw in me anyway when something “possibly life changing” (if that makes sense) happens.

So have yours done ok at school and have they got a few friends? Is it always the case for yourself and yours that autistic people don’t pick ip on sarcasm or is that something you can learn to work on? Or has it even mattered much in everyday life to you? God i hope it’s ok asking these things. Obviously I don’t mean to pry, just trying to learn what might be ahead for my girl, even though i realise everyone is different etc.

Also, the fact you went decades without being diagnosed must mean that living a pretty “normal” life is completely possible, even if you had some internal struggles.

I had very bad social anxiety in my 20’s and 30’s (I’m 42 now and only really got it under control a couple years ago) which really damaged my life so I can certainly relate to the feeling exhausted after social experiences bit.

madeiracake

Yes I understand when my son was diagnosed I read every bit of research, article and anything that I could on autism. Some of it good, some bad and some crazy. I had to stop because it was consuming me and I realized it was actually distracting me from the child in front of me. When I realised I was on the spectrum too it felt like someone gave me the piece of the jigsaw that was missing from me and now I could see the whole picture. I had a "normal" life, studied, had good jobs etc.

Yes both of mine are doing very well in school. Son sometimes has meltdowns but the school are very good in dealing with him and the improvement in him is unbelievable. He has friends and is really bright. I was terrified when my daughter started secondary school as her best friend was going to a different school. Would she be all alone and excluded? But she made a small group of decent friends and I'm so delighted and relieved!!

Think of the diagnosis as a tool you can use to help her. I tell my two that autism isn't bad it's just our brains are wired differently and we just see the world a different way. That sometimes things that don't bother other people bother us. And that sometimes things that bother other people don't bother us. And it's ok.

Ask your daughter is there anything that bothers her at school?y daughter found days when they didn't get out in yard very noisy and as the day went on she would get headaches and distracted a lot more. So I talked to the school and on these days she was allowed sit in the corridor and read her book. It made a huge difference. Just see what little things like that you can do for her. She was worried about the other kids but when they asked she just told them it was too noisy and she was getting headaches. They were grand about it. Far more accepting than when we were at school.

Also tell her you are trying to figure out ways to help her and you can try them together and if it doesn't work out well you can try something else. Another one is if you are out tell her to squeeze your hand if it's getting too much for her and you will find a quiet place for her. Don't be afraid to leave somewhere if it's overwhelming her. She will trust you to give her an out if she needs it. Also when out you can say it's very noisy, bright etc show her you notice these things too.

The sarcasm can be worked on as well as jokes and facial expressions. This gets easier as they get older. Also I use exaggerated faces and "sorry, not sorry". For example ask her to share something with you and if she says no, do a really exaggerated oh no face, and say "sorry" in a sad voice then not sorry in a jokey voice. Give her lots of reassuring.

Another big thing is to tell her that you are figuring out how to help her and you can both try things together if it doesn't work that's ok and you can try something else next time. Don't be afraid to tell her you made a mistake, and if she makes a mistake say everybody makes mistakes that's why they put erasers on pencils.

If she is struggling with something tell her a time when you struggled too because letting her know that she isn't the only one is so important. It makes a huge difference if you can say oh I found something really tricky. Also tell her that everyone has something they aren't good at and something they are. That she is young and everyone has to try different things to find out what theirs is. And sometimes you don't have to be great at something to enjoy it.

madeiracake

Also normalize feelings. A lot of times children with autism are under huge pressure to be happy all the time or not get angry or upset. Say it is ok to be angry or upset if Joe gets more sweets than you but it's not ok to throw Joe out the window. It's ok to be a bit grumpy if you are tired. If you are out of sorts tell her and explain why and then she will understand it's ok to have those feelings and she doesn't have to bottle them up. I say I'm sorry I'm a bit cranky today I didn't sleep well. If she is upset ask her is there anything we can do to make you feel better. Maybe suggest resting and pulling the curtains for a while or a hug. Blanket or teddy for comfort. Give her time to settle.

All the little things add up to make her feel secure and make it easier for her.

DRedSky

Thank you! Thank you so much. You’re a very nice person madeiracake to take all this time to help.

You’re obviously a natural at parenting, plus for obvious reasons you have the right knowledge to know how their little minds work so this is exactly what I needed, to help guide me.

It’s like you said earlier, it’s incredibly time consuming and overwhelming trying to research plus it’s never easy knowing which sources are even reliable.

It just means a lot to hear things from someone who has experienced it as both a person and a parent.

I’ve started my little little notebook and so many of the tips and advice you have given me will be used.

Both your son and daughter are very lucky to have you to guide them.

I’m probably always going to feel a bit out of my depth but it’s wonderful to have some proper first hand useful guidance.

Thank you for that.

madeiracake

Aw thank you. Believe me I have to work at parenting. And the HSE have provided lots of zoom courses and parenting courses. ( You will find they train the parents rather than give individual therapy to the children 😞). Pick choose and adapt what works for your daughter and you. When I mess up I say sorry and I will try better next time. It's hard to be patient some days when you are running late and they are delayed because a sock isn't sitting right or some minor thing is major for them or they decide to tell you something in great detail instead of getting out the door😬 or 5 minutes before the shops close my daughter realises she needs ingredients for home economics first thing in the morning 🙄.

Honestly just support her as best you can. Love her for who she is quirks and all. Don't push her to be like everyone else, she is who she is and sometimes it feels like they are their own worst enemy and make it harder for themselves.. take a deep breath and remember the storm will pass but no matter what she needs to know her daddy loves her when she is having a bad day or a good one.

DRedSky

Thanks! Yes i will, I’ll make sure she knows I love her and i’m there to support her.

I think she has a great mum too who will be there for her all the way and her twin sister is a really sweet kid too so she will always know she will be loved dearly and supported completely.

It’s times like this when it’s very very difficult living apart from her but I’m determined to make it work as best we can.

Thanks again for all the advice and info and insights. Helps a lot.

madeiracake

That great that she has a wonderful supporting parents and sister. Another thing that will help is to make sure that each twin gets some one on one time with a parent. Where you do something where they are the the sole focus of attention. Even an 30 mins/hour of daddy daughter time gives them a huge boost. And I learned the hard way put the phone away 🤣.

DRedSky

Ha yeah they already picked me up on reading football scores on my phone before when i was out for food with them.

Good point about the one on one time. Actually I’m guilty there because i always tend to do everything with both of them at the same time so that’s a good point and something i need to be more conscious of.