To ask what if the assessment says he doesn't have asd?

[Hedwigsradio]

Does it mean that after years of trying to get help it was just me causing the problems as the drs said when he was younger as he's not like it at school?

We are still waiting for the assessment but I was just wondering what happens afterwards. Will being labelled actually make any difference? Will not being mean myself and his siblings be left just get on
with all the violence and screaming. Will he just have to carry on being in a constant state of anxiety? The only reason we are getting the assessment is the school senco worker picked up on something being off if it wasn't for her we wouldn't have even got this far.

Sorry if this is a bit mixed up I'm just confused by it all.

I am pretty confident that Services will try to support you and your son as best as they can even if he does not have ASD. It is more about how he is affected in his day to day life than the actual diagnosis.

The diagnosis can help inform the most appropriate intervention, and help with benefits etc, and make getting help easier, but symptoms should not be overlooked.

Hopefully he will get a diagnosis, and things improve xx

If he gets a diagnosis, he should get an EHCP which means reasonable adjustments would need to be made for him at school. As regards to home life, not a lot will change, unless they want to trial some medication for anxiety, adhd, or any condition he’s diagnosed with that they can prescribe for and it’s appropriate to. Then it might improve. Your coping strategies can change and make a big improvement based on his diagnosis. Without knowing it, your home set up could be making things worse. I don’t mean this is your fault and I say this utterly without judgement. I have my own children with additional needs and not having an incredibly strict morning routine did not benefit one of them at all. I thought I was doing the best thing by taking a relaxed approach, but it made them anxious because they needed to see what was coming next. We got a visual timetable with a clock next to it and different parts of the day with timings mapped out on it and they coped much better. We made a responsibilities and rewards chart too.... kind of like a chore chart, except just full of usual expectations like putting out shoes away, brushing teeth before bed, making bed in morning etc. It calmed down the aggression and anxiety really well for my child, and life truly was unbearable at one point. My child didn’t even get the ASD diagnosis. She is female, so she masks and mimics. They’re trickier to diagnose as they mostly like and/or cope with social situations. She’s got “Emotional Disorder with anxiety and depression, and features of social and communication difficulties.” There’s no magic wand I can tell you to get, I’m afraid. Finding a routine that works, setting your expectations and the rewards and consequences in your home and making sure they’re fair and achievable for everyone is going to help. Making sure your children get individual time with you as well as fun, supervised time together will help build a mutually respectful relationship between them. If there is no diagnosis? I still advise this. Some people have to be seen by several professionals before someone actually assesses the difficulties they have in practice and not those that should exist on paper.

Good luck. It’s hard work but really, once you’ve set all the expectations and limits it will get easier.

I can understand how you are feeling. My 14 year old Ds is being assessed for asd at the moment. As his parents we have suspected for years that he is on the spectrum but I am also worried that he won't get a diagnosis and therefore be unable to get support. I hope you can get the help you need for him and your family.

If he gets a diagnosis, he should get an EHCP

Ehcp are issued based on need, not on diagnosis. ASD does not equal getting an EHCP and likewise, there are many children out there without formal dx but with Ehcp.

On a practical level, OP, I found dx did not make much of a difference. DD had an EHCP before her ASD dx so school support is ok. Outside school there is no help, no support, no intervention, no respite. absolutely nothing.

I'm wondering the same thing OP about my situation.

Don’t expect to get an EHCP, they come with extra funding and are therefore very rare and only given to children with extreme needs (who also have the correct paperwork).

A diagnosis may mean that there are parenting courses you can go on and it will give you access to support groups in the community. School should already be making reasonable adjustments anyway, based on need rather than diagnosis, but a diagnosis may make things clearer as to what the adjustments need to be.

Hedwig, does your health authority offer any support whilst your child is undergoing assessment? My local NHS Trust has an autism clinical pathway practitioner who is available to contact if you feel you need any help or advice. They also run a workshop for parents whose children are undergoing assessment.

Services are increasingly needs, not diagnostically, led. So your DC, and you, would fall into a grouping of children/young people who share a similar level of need. Help would be focused upon meeting those needs in partnership with you.

I was worried about this too and was advised, if they said no dx, to use the rest of the meeting to ask exactly what they did observe and what can be done/what might help. As I was told, they’re not going to tell you, hey this child is 100 percent NT, they will be able to tell you what they’ve observed.

My child was diagnosed with autism (would previously have been Aspergers, or HFA, but our trust doesn’t use those terms now). We were given a referral to a local charity and some DLA forms. We had one follow up meeting and we were signed off. The local charity ran a 12 week course on parenting children on the spectrum & I found it very useful. I felt less alone in wondering if it was my fault. I think we all do this - I do and I have never had anyone suggest or imply it. A music therapist friend of mine says if she had £1 for every parent she’s met who thought it was their fault, she could give up work. The course I did didn’t require you to have a diagnosis for your child, so might be worth looking into whether anything like that is available near you. Good luck.

autumnboys reason for not using term Aspergers et al is because the DSM 5 (the newest USA/International diagnostic criteria as opposed to the ICD) no longer uses that term this has filtered through to the UK

A diagnosis means very little, things like EHC plan funding boils down to need. I wouldn’t worry if he doesn’t get one as it doesn’t make a difference, and also don’t expect that if he does, that something magical will happen. No support will be forthcoming for the home, no magic money pot or special doors will suddenly open.

Has the school asked for a Statutory Assessment to be done?

Are you in contact with loca ASD support groups-they can be invaluable.

The school are the ones pushing it forward. I did ask what difference it would make and the woman who noticed the problem said it would make things easier for him but never really said why. I don't everyone just expects you to know what everything means and what happens.

What do you expect to change at home with a dx? If he is ok at school, it isnt going to help you at home. What are you hoping to gain from it? It might help you get that anyway, with or without a dx.

Have you looked objectively at your routine and environment at home? Is it calm, cluttered, organised, clear boundaries and expectations, consistent? How much time on electronics? How much time outside? Have you considered parenting classes to find strategies that might help you with the specifics?

It is very common for children to be worse at home, because of a number of issues like lack of structure and just because that is their safe place.

We are in same boat school insisting wrongly you need asd diagnosis for ehcp. Having said that in our area there is a couple of schools with autism cabins need diagnosis for but generally an awful lot of hassle - our area insist on parenting course, ed psych, FSW, EHA before first meeting - for very limited help. Also have to see cahms even though no MH issues. Crazy system. Thankfully no issues at home just school but sympathy to you.

I think a lot depends on the area and the assessment tools used. Both of mine with ASD had the ADOS as part of the assessment. Had they not met the crtieria for ASD, the process would have highlighted areas where my child was struggling. I was told no dx didn't mean automatic discharge, it could be they recommend an alternative dx, or you are kept on wait and see for a bit longer.

How useful is a diagnosis? Well, a lot of services have been cut back so it really does depend. Certainly in my area there are still some services that require an ASD dx to be able to access them. We used to get support from the ASD specialist teacher, who was really amazing and could observe and give recommendations to school DS1 is now in a school with enhanced ASD provision but he also has an EHCP.

Getting mental health support can be hard, I found the ASD was a bit of hindrance for DS1 tbh as I kept being told that his difficulties were in line with what they would expect for a child with ASD. but eventually got a referral accepted and when we saw the clinical psych we were told DS1 could attend a CBT course specifically for DC with ASD and anxiety.

For both of mine, the dx has been a useful when dealing with some school issues. DS1 is back and forth on the diagnosis being a comfort or a cause of upset for him. He was dx at 3, now 13. He is aware he is "different" from a lot of his peers in his mainstream class. Doesn't always relate to those in the ASD base though!

Good luck, I hope the process brings the support you need, diagnosis or not.

I dont even know what half of those things mean. This all started as he went to a course about dealing with emotions. I have never expected to get help. I never managed to even get any when he was still wetting himself during the day at the age of 8 I just got told it was had potty training even though his both his siblings younger and older were dry by 3. We try to have routine at home obviously with 3 children sometimes things aren't 100% the same. He says he kicks off at home because he can't do it at school.

"On a practical level, OP, I found dx did not make much of a difference."

This is true. It also doesn't stop the ' blaming' from some people including professionals who should know better.

It may help the person to understand themselves better.

I dont even know what half of those things mean

Asking here is a good start, but I think one of the best things you could do for your son at the moment is research properly what help there is for children with additional behavioural needs so that you can start to advocate more effectively for him. You could also start doing research into ways to help him with his behaviour at home, to reinforce what the school is doing and what any medication may do in the future. You are the person most invested in your child and best placed to help him.

I think that holding it together at school and then kicking off at home is pretty common with sad children. My friend had the same situation- nobody could believe that her ds, who was petrified of getting into trouble, was a nightmare at home.

His diagnosis helped them as a family to work out better how he ticked and how to make life work for them all. He’s now at uni and thriving.

Good luck with getting some additional support for him and finding strategies for helping you all.