I have a daughter who was recently diagnosed with autism. I'm finding it quite overwhelming

lulu221110

Hello!

My name is Lucetta and I am a 33 year old mixed-race teacher from London.

I have a four year old daughter who was diagnosed with Autism in February 2022. She is bright, lovely and funny and struggles with social communication and can get very frustrated easily. She will be deferring her entry into primary school due to her being summer born and having additional needs. Her being on the spectrum came as a surprise as initially it seemed as though it could just be speech delay, but as time progressed it became clearer it was more than that so we are learning the ropes in terms of how to best support her.

I also work with children with additional needs in my day job. A lot of these children have ASD or special needs, so while I do know the system as an outsider, I am manoeuvring it for myself for the first time and finding it challenging at times!

I have been finding the whole process of her getting diagnosed quite overwhelming and I am looking forward to being able to communicate with others who have experienced the same.

Tori_Scope

Welcome to the community @lulu221110 This is the post I made for you- I hope you find it okay!

It's great to have you on board. Thank you for telling us about your situation. I can only imagine how overwhelming it must be for your daughter to have recently been diagnosed with autism. Being on the other side of the process can be really quite different! 

I've put your post in our children, parents, and families category. I'd also encourage you to visit our category for discussions relating to autism and neurodiversity. By reading posts in these categories, you'll be able to see that you're certainly not the only one who's experiencing these types of feelings.

If you haven't already, I'd encourage you to check out our family services, especially Navigate and Parents Connect.

Do you think that the school will be supportive when she starts? I imagine that, as a teacher, you're pretty aware of the kind of support your daughter could access, but you may find this NHS page helpful all the same.

I've also heard good things about the Special Needs Jungle website, which helps parents to navigate the world of SEND.

Siwheels73

Hi @lulu221110, I can imagine that the diagnosis would have been a shock to you, but your daughter hasn't suddenly changed, so in a way I guess it is business as usual. The positive part is that with a named issue, then you can push for help and benefits for her (or in her name to you.) 
I have a couple relatives on the Spectrum, but they are growing up just fine, and I am sure your daughter (and you) will be fine. Good luck!

Karen7788

Hi @lulu221110,
Have you tried austismlinks.co.uk ?
They have details of support groups, there are lots in London, they also have lots of information, resources and accessories.
Good luck with everything. 

lulu221110

Thank you @Tori_Scope for your helpful response. Yes, I do feel her primary school will be very good. It took a while to find them as all of our closest schools would not allow her to go there with deferred entry and so I looked a bit further out (still only a mile away from us so convenient enough). We have managed to be given an EHCP already which was a huge relief to me. They granted her level three and I was happy with the plan when it was completed. She was 'supposed' to be starting reception this september, but will now go september 2023 instead which is great as she will have more time to develop her communication skills and learn to manage her emotions a bit better. We are very proud of her and she is the apple of my eye! 
I was actually pointed to this forum through Navigate, and I have to say I am really thrilled with how wonderful it is. Thanks so much for the support,

Lu

lulu221110

@Siwheels73
Hello! Thanks so much for your kind response. It has been a bit of a whirlwind year, with getting her the diagnosis and EHCP in place etc but as you say, she has not changed and now she has the diagnosis we can support her much better both at home and at school. Great to know that your family members on the spectrum are doing well,  my biggest wish is for her to feel accepted, happy and proud of who she is. This seems like a very supportive and welcoming place so far!

lulu221110

@Karen7788
Thank you Karen, I will have a look at this now! Best wishes and thanks for commenting

Tori_Scope

That all sounds positive @lulu221110 It sounds like she'll be all set up for September 2023, with the best chances of success.

Ahh, it's great to hear that you've been using our Navigate service! How have you been finding it? 

How did you find the EHCP process? 

lulu221110

Thanks @Tori_Scope ! I am finding the navigate service truly wonderful and I have so much admiration for my advisor who uses her own experiences to help others find their feet. 

In regards to the EHCP process, as I work with kids who are regularly let down by the system, I was very nervous and anxious/waiting for the LA to mess up from the get go as I have millions of horror stories already swimming around my mind from my job.

I did have to have some stern words and tie IPSEA into a few emails but we got there in the end and I have to say I do feel very blessed that I managed to get the diagnosis, EHCP and her DLA and deferment all organised in one year. I know that people even in my own borough have been waiting for years, so I can't complain and feel very lucky that it was all fairly straightforward for me. Now though, I feel a bit at a loss.. so we have all of the things we 'needed' now, but I do still feel very anxious for the future and Navigate is really helping with that. I have told a few friends about the service and hope they will apply too.

Karen7788

I hope that you find all the support that you need @lulu221110.
One of my work colleagues is going through a similar situation and it’s been a bit of a roller coaster ride for her and emotionally draining. 

Best wishes.

Sosky

I'm in a similar situation @lulu221110  My sons, aged 4 and 5, both received their autism diagnoses this year. I'm also a teacher and also in London!
Luckily, I've managed to get EHCP in place for them both, as I had also feared being messed around by LA but it was ok (although they're quite reticent about the funding).
My main problem at the moment is that my four year old is violent to other children. He scratches his brother's face frequently, and also goes in for completely unprovoked attacks on other children in playgrounds etc. It's baffling as a lot of the time there is no context of disagreement or anger - it seems to come out of the blue. It's very isolating as I now don't have the confidence to do many activities and am quite reluctant to socialise. 
I am finding the Navigate service really helpful, and have a lovely support worker who is so encouraging, and who directed me to come to the message boards here!
Hope you and your daughter are having a good week?

Sue_Alumni

Good morning @Sasky and thank you for joining in on this discussion and sharing your experiences and insights with the community. I'm so pleased that you are finding the Navigate service helpful and do please continue to post and keep in touch. 

lulu221110

@Sosky Hello and thanks for commenting 

What a coincidence! I live in Walthamstow in Waltham Forest and I have to say I was very anxious throughout the EHCP process as I had previous knowledge of how some of the children I have taught have been treated but luckily it all came through. Sorry to hear you are having a challenging time with your youngest. Is it just when people get too close? I hope you will find a way to work through it soon! I can imagine that this feels very isolating for you as I do sometimes have to force myself to go to events with my daughter because of finding her behaviours difficult to manage to I can see how isolating this might be for you all. Nowadays I mostly take her to SEND events locally and I feel a lot less pressure and judgement there from other parents. We went to https://thetogetherspace.co.uk/ a few times and it was a really lovely, non-judgemental and supportive space for everyone so maybe you might find somewhere like that helpful? 

I am really enjoying the navigate service too, its so nice to talk to someone who 'gets' it! Me and my daughter had a bit of a rocky start to the week but its looking up a bit now (very glad I booked her in to go to nursery tomorrow though! Need a break!).


Have you got any nice plans for the summer? Hope you manage to get some rest too  

Lu xx

Sosky

Hi @lulu221110 and thanks for your lovely message. I'll definitely check out the Together Space - think I have seen a post about them on Instagram!
Are there any other SEND events / venues you're aware of. I'm in Haringey so not a million miles away, but I can't seem to find much available locally!
We are having a nice week and I did have a lovely visit to a playground with no issues as well as a playdate with a friend who 'gets it' and in fact my boys were absolutely fine. So that's reassuring. Positive experiences really help my confidence but then all it takes is an episode of violence (last week he bit a child in the playground) and I get so discouraged 
The violent behaviour is pretty unpredictable. Sometimes there's an obvious source - conflict over a toy or something, but sometime it is (to me at least) completely random / unprovoked. For example he attacked a child in the street the other day - literally just a stranger walking past. And once when we were leaving nursery he scratched another little girl on the face. She was just standing in the lobby at the same time, no interaction, not crowding him. 
I think sometimes friends and family think I'm over-reacting in terms of how bad it is, as the 'attacks' are usually fairly trivial, but what I think they don't understand is how exhausting, just sheer bone-breakingly exhausting it is to live in a state of constant high alert, constantly fearful of social judgement (sorry for the rant!)

I'm trying to find out about SEN friendly sporty activities too, but not having a great deal of luck. We tried gymnastics last year but it was a disaster as the class was massive and he couldn't follow the instructions at all and just ran away all the time. Do let me know if you're aware of any inclusive gyms or clubs! I've just posted a message about this on the Scope boards so hoping to get some advice, and also going to try posting on mumsnet as well.

Hope you're enjoying the days you have together with your daughter but that you're also having that chance to drop her off at nursery and have a breather. Teachers so need their breaks!! xx

lulu221110

Hello again @Sosky
Sorry to hear about the biting incident. That sounds really stressful. It has happened to me before (my daughter bit me, not another child though) and it really upset me for days. I get the same from my friends and family who like to play it down at times, but I am always really anxious about the pressure for my daughter to 'grow out' of these behaviours before she reaches an age where it can no longer be acceptable or viewed as 'toddler behaviour'. Sometimes I think other people reassure you etc when in fact they just want to reassure themselves so they do not have to think about it so much!

Great that you had such a nice play date in the playground with no challenges before that though, I guess we have to push through by focusing on the positives and trying to use the challenges to prepare ourselves and our kids for future outings. I went to the Autism Show and I spoke so a specialist there who explained to me that those types of behaviours are usually down to anxiety surrounding either sensory issues or communication (I have this really great research paper on anxiety in autistic people that I can share if I figure out how... not sure if we can share emails or private messages on here!?).
The specialist mentioned that sometimes when autistic children lash out or are violent, it can be something as simple as how someone smells, or a colour that the person they attack is wearing that they find painful to be next to etc. My daughter does not seem to have much sensory difficulty (except with food) but she gets really anxious about people attempting to talk to her. If a stranger makes eye contact with her she normally screams or shouts at them before they have the chance to ask her any questions. It can be funny at times but it is concerning too. I guess I have to find the balance between taking it with a pinch of salt and figuring out how to help her through it. 

I really, really felt what you said about being in a high alert state all the time and have had this conversation with my own counsellor recently. Even if she does behave well, and have a good time,  i'm still exhausted at the end of it because I have spent the whole time basically holding my breath waiting for the meltdown, trying to always be one step ahead of what may happen next. You are right, it is totally exhausting and must be really hard with two of them to keep an eye on. It sounds like you are doing a fab job though, still going out and trying new things even though it can be challenging. One thing that I find to be reassuring is that my daughter is changing all the time, she has already outgrown a lot of behaviours I was really concerned about so I try to treat all of her challenges as though they are phases and usually I am right (not that that makes it any easier to deal with in the moment though!!)

I spend A LOT of time in Tottenham in Haringey, and actually run a youth club at the Engine Room in Tottenham Hale if you have heard of it? My daughter's nursery is also in Tottenham near white hart lane. 
You may have already heard of this place seeing as you're in haringey, but I will mention it just in case. At Markfield Park (again in Tottenham Hale), there is a centre for autistic and disabled children and adults called The Markfield Project (they're on facebook so you can look them up if you like). The Markfield Project is kind of behind the cafe and it is a huge space with an outdoor adventure park for children with additional needs. There is a lot of space, hammocks, bikes, a trampoline and scooters etc and my daughter LOVES it there. I took her there a lot when I was waiting for her diagnosis and it was so nice to be with other parents and kids in the same boat, I felt no pressure to try and control her behaviour. The staff are lovely. We could meet there one day if you fancy They have an open access every Saturday from 11-1.30pm. They also offer classes and free talks with educational psychologists etc for residents of haringey. 

Hope you have a lovely weekend,

Always here if you would like a chat! I will try to see if there is a private way for me to send you my email or number.


Take care,

Lu

Vae

Dear Lu,

Reading about your journey has really helped me. My four year old son has just been diagnosed with autism and ADHD... It is helpful to have the diagnosis but exhausting too. Reading your messages makes me feel less isolated.

Thank you for your honesty.

VAE xx

Alex_Alumni

Good morning @Vae and thanks so much for sharing with @lulu221110 how she has been able to help you feel less isolated, that's what this community is about, and it's lovely to see

Do you feel like you and your son are getting enough support day to day with his new diagnosis?

Vae

Hello Alex,

Thank you for your response. I have been using the Navigate service which has been invaluable but I do not get much support day to day. I am trying to find an autistic café to go to with my son as I think that would be helpful. I am based near Rickmansworth in Hertfordshire. My son's school have been extremely helpful but it is harder in the holidays.

Thanks again. Have a lovely day.

VAE xx

Alex_Alumni

An autistic café sounds like a lovely idea @Vae!

I wonder if your local council or community centre might be able to help get an idea of things that might be fun for you and your son? 

I'm really glad to hear you feel supported by both the Navigate team at Scope, and by your son's school, that's really positive to hear. 

I can appreciate that things are trickier in the holidays. I do know of a charity called Extra Time which is based near Brighton, set up to help families with children who have special educational needs and disabilities find affordable and suitable childcare, especially during school holidays.

I know it's not very near you, but it might be worth getting in touch to see if they know of any similar organisations. 

What sorts of things does your son enjoy doing?

Vae

My son loves Marvel and DC Villains - he is completely obsessed. He also loves water and swimming, he enjoys playgrounds and going on the swings. He used to like Lego but seems to be going off it. He has a special interest and they change...

I have just contacted herts family service. Will look at Extra Time too.

Thank you for the support.

Alex_Alumni

It's lovely to hear that he's passionate about so many things @Vae, and I'm no expert, but I think it's quite common for most children to move quickly through interests, I know I certainly did growing up  

Do let us know how things go, and you're very welcome.