To not pursue any further assessment

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DD is five. There has always been concerns about her developmentally with 5050 on ASD and a wait and see needed. This has been ongoing since she was 22 months.

I'm exhausted by it all. Yes I have major concerns but she is happy at school. I don't see what benefit any further assessments may have. Has anyone who has had concerns specifically chosen not to pursue investigating them?

It really is a long, often painful process but it’s so worth it. An official diagnosis will make all of your lives easier and she’ll access support that she sadly otherwise wouldn’t. As above posters have said, school cuts mean that the children with statements and official diagnosis are the ones who get the little support available. It’s really sad but now more than ever, you need to stick with this and get that diagnosis.

I'm just so done with it all. Life is absolutely miserable for us at the moment and it's been 3 years, lots of "we think it's this but we aren't 100% so won't diagnose" and she's recently started school which has ruined our home life. Argh..just need to vent.

I just want out of the system.

Another vote for pursue. My son wasn't diagnosed until he was 13 and now has so many issues as a result of the lack of early support. Diagnosis enabled him to finally get a placement at a special needs school. I think of diagnosis as a key, without it most doors are firmly locked. It's so hard to get any help and support, in an ideal world your daughter should get all the help she needs without diagnosis but that's not the reality. Also the older they are the more difficult it is to get a diagnosis as they mask and learn coping mechanisms.

Keep on with the assessment, you may think everything is okay now but as your child gets older you may find that they need more support transitioning from primary to secondary school as well as going through puberty with all the changes. Having the support already in place is best because if you have to get back in the system it could take several years.

Why has school ruined your home life? Is she struggling at home?

I get your frustration but if your DD does have ASD then she's going to need support for many years to come. Withdrawing from the system doesn't change those needs.

I didn't get diagnosed until adulthood. I love my family but can't help but feel resentment that they didn't seek help for me when I was a child. My life could have been very very different if they had.

If your home life is suffering because your child is in school then that is indicative that your child isn't getting the support she needs in school so the very last thing you should be doing is withdrawing from the system.

in an ideal world your daughter should get all the help she needs without diagnosis but that's not the reality.
I second this. Schools just don't have the resources (that is, staff) to give adequate support to children who have not been allocated so many hours a week of support following a diagnosis. They do what they can, but a child who needs a couple of hours 1-2-1 a day can easily wind up either only getting half an hour a couple of times a week, or (if he or she is really struggling) absorbing the class TA's time to the extent that other children who are also floundering are not getting the help that they deserve.

In short, without a diagnosis, everybody suffers (your child, the other children, the over-stretched TA, the over-stretched teacher). With one, and additional support in place, everybody benefits.

Sorry but you can’t just give up on her. She needs you to keep fighting for her.

It isn’t an easy process. It’s better do persevere now instead of waiting until it really impacts you and your DS. If he struggles more later on it’s going to make it harder on you all because there is no diagnosis and therefore no plan with schools in place to give you all the support they can. It’s hard now but will make some of it easier in the long run x

I would do it. Girls with undiagnosed ASD are particularly prone to anxiety disorders and eating disorders when they hit the teenage years. Much better to put coping strategies in place before then

Please stick with it!!!! It is worth it in the end but it's not an easy path, if you stop now it will be harder in the long run.

I thought all needs should be met with or without a diagnosis?
Officially they should. In reality accessing even the most meagre of support is easier with a diagnosis. My ds has a different condition, which he was diagnosed with at 8, we have found attitudes have changed massively since his diagnosis.

Im not giving up on her but I am at absolutely breaking point.

Thursday walking home from school in the playground she was hitting/kicking/biting/headbutting me. I had parents trying to help which made it ten times worse. It took 20 minutes to get her to the car. This is day in day out. Mornings are hours of anxiety and violence. Afternoons are the emotional breakdown. I'm absolutely exhausted. She doesn't sleep. She doesn't ever stop demanding. We never ever talk about anything other than the next demand. It's relentless.

Unfortunately ASD might not impact on a child until they get a bit older so often Drs will resist assessments until they are a bit older than 5.
I would suggest that girls with ASD can tend to have significantly more social problems than their ASD having an impact on their academic ability.
Our DD has an I.Q. of 130 but has no friends and her ASD affects her mental health tremendously in that she can suffer from anxiety and depression a lot. Without a diagnosis she wouldn't have the help she does not only in school but also after school and holiday clubs. She has had O.T. help with sensory problems which have been great and has the help of the disability team in social services which has given us advice and help to get financial support for quite a few things.

She needs a diagnosis so that all of you can access support - it's not just about your dd getting support, families need it too.

Just seen your last post. Our DS was like this. We discovered that he just couldn't cope with the chaotic nature of the school. the noise, too many colours and stimulants in any way made him react in a vwery deregulated violent way.
I would go and see your GP immediately for a referral to Occupational Therapy or Peads for some help with deregulation and sensory problems.
Look up a sensory diet on line and see if any of the suggestions help.
We eventually took our children out of the local school and put them into a much quitter prep school where they were taught in small classes in a quieter more traditional way. They also had loads of outdoor sports and play with really helped.

We found our DS couldn't cope with queues, physical contact, noisy situations generally or music.

Every autistic person I know with a diagnosis is glad they have it. On the other hand, I'm in numerous autism support groups filled with adults who are absolutely miserable about not having one, or about not having had one in the past when they needed it. Official recognition matters here, whether it should do or not.

In general, autistics who know their parents blatantly ignored the signs and left them without the protection of an official diagnosis find it difficult to forgive them for their carelessness, and I don't blame them.

This has been helpful for me. We have always had difficulty with our ds8 but never pursued it as heath visitors, nursery and then school never shared our concerns, making me feel like it was all my fault due to bad parenting or being overly anxious.

Moving forward he still has issues at home but much easier for us to deal with at home, a lot, I think because we are good at enabling him now as it is our normal. But school have had concerns since June. So we are going down the assessment route. I never felt I could before as no one had corroborating concerns and that made me feel it was all our fault with poor parenting, or overly anxious parenting. So there is a little bitter irony now that we are going down that pathway at a stage when we as a family are struggling the least.

But he should have the diagnosis by age 9 which feels late for me (considering I’ve been concerned and struggling, but dismissed since he was a toddler!!) but reading here reassures me that it is a fairly young age, to be diagnosed, considering secondary schooling and teenaged issues.

I hope Ds doesn't hate us for his late diagnosis. I already feel like I have let him down.

Thursday walking home from school in the playground she was hitting/kicking/biting/headbutting me

Probably anxiety and sensory overload. Loads of autistic kids are the same.
See if any of the techniques in this booklet help you to see why she behaves like she does.
www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?v=201507131117

You need support. Once you have that you’ll be better equipped to deal with her. Look at the National Autism Society and other similar sources. You’ll soon learn what triggers your DD and you’ll learn how to cope or avoid the situation. Ask your doctor for a referral to paediatric services. The process is much quicker through an EP, it is in my area anyway. Do you have a partner or someone who can help you?

I know I need support I'm just so tired of not being able to access it that I've just reached the point of giving up on it.

Typically my younger one actually has a global delay diagnosis and every professional involved knows his needs are nothing in comparison but he can access the support and she can't. It's frustrating.

If she's doing that when she comes out of school then she isn't fine at school. She needs a diagnosis even more if she's struggling already.

I know first hand how hard the process is, especially for girls. It's frustrating and soul destroying at times when no one is listening. But it's time to pull your big girl pants up and fight for her - she's too young to advocate for herself. How do you think she'll feel when she's older if she finds out you gave up because it was hard?

Sorry if I sound harsh but she needs you.

In the meantime perhaps ask school if there is any support available before a diagnosis? I take it she's masking at school if it's all coming out at home time?

Are you a member of any SN groups, either online or in person? Having someone to rant at or ask advice of got me through some dark times when we were fighting to have DD assessed. Feel free to PM if you want any recommendations for online ones

Good luck OP and

Thank you. I have just joined the one recommended above.

I know I will pursue the assessments but it is so so hard when every appointment (that are 6-9 months apsrt) just create more questions and zero answers and she is just so violent.

It's just me, her and her brother and he has global delay and I'm 99% sure that's because he gets zero time or attention because of bigger one.

No, OP, your younger child doesn't have GDD because of your other child or anything you may have /have not done. So stop beating yourself up about this.
On the other hand, your eldest child may be struggling with her behaviour because of the needs her sibling has. She's fighting with him for attention, perhaps she has found not having her DF around anymore to be too hard to process?
Behaviour is communication. She trying to tell you something. She can behave appropriately at school then it all unravels as soon as she sees you at home time. She's had assessments and they are reluctant to diagnose her at the moment. I thinkmin the first instance you need support in strengthening your relationship with her as that's what you're struggling with. Even if she has a diagnosis, this isn't going to change. In my LA there are support services in place that could help you, such as Early Break, First Point etc. Especially as you have a younger child with GDD. Speak to your health visitor and /or school nurse in the first instance, they'd can be a great support with challenging behaviours in younger children.