Autism diagnosis- what next?

[MonsterRehab23]

DS aged 9 has just been diagnosed with autism. It wasn’t a complete shock but I’m still feeling very emotional. He is healthy, happy and making progress at school, I know it is not the end of the world. I grew up with an uncle who has autism, alongside other complex needs, so I have a bit of knowledge, or I thought I did.

For background: I always had niggles about DS since he was about 2. Concerns about his motor skills started from age 4 and he was referred to OT at age 7/8. During an OT assessment, observations about autism were then made- DS social awkwardness and mannerisms, cue referral, assessment and diagnosis over a year later- aged 9.

I’ve been given an after diagnosis pack to read but it’s making tearful and I burst into tears when picking DS up from school. He is aware that he was being assessed for autism but I don’t know whether to tell him or not? DP thinks not- he feels it won’t change anything.

Can anyone advise me what their first steps were? I’m planning to have a meeting with the school (when I feel a bit calmer) to discuss any extra support. We’re in Scotland so no EHCP and CAHMS weren’t able to give me much information about getting a care plan, or if I even should? He receives some extra support for social skills but I feel needs extra support with written communication. We also need support to manage his meltdowns and help him with anger, in particular. I’ve been given booklets on DLA but don’t know if he would really qualify.

I’m scared of telling wider family as autism remains a bone of contention, due to the misunderstanding and mistreatment of my uncle.

Sorry if this is long, I would be grateful for any advise from other parents, thanks.

Anyone?

I am early on in the process too but will tell you what has happened to us so far. Dd (6) diagnosed on 1st May, given all of the post diagnosis things then 6 weeks later was called back to the unit (just me) for a meeting with the nurse to discuss any worries that I had since diagnosis and just to generally reassure and to offer advice on support groups etch Next is an appointment with the paediatrician approx 6 months after diagnosis. I haven't had that meeting yet so that's as far as we have got. We didn't apply for dla, I don't know if that is any help but I know that it feels like a bit of a wilderness after the diagnosis.

Thanks for sharing your experience. Afaik we have no follow up. OT took time to explain markers of his diagnosis but that was pretty much it. No real advice or recommendations on what support services he should receive.

I haven’t told DS yet. He asked how the OT appt went and I just told him that I was told lots of positive things about him, because I was! We’ve decided to sit on this over the weekend and process our feelings. DP is much more positive than I am though. I’m trying to find Scottish govt guidelines on my rights regarding education provision. But you are right, it does feel like a wilderness.

We haven't told our dd yet. The paediatrician asked if we wanted her to explain to dd but we declined and decided to play it by ear with her. We have talked to her before about thinking in a different way etc.

We have an older dd (23) that was diagnosed with autism in 1999 and went on to do really well through school and all through uni and onto a good job so we are not as worried as we might have been. The gp or nurse can point you in the direction of support. Also look at Facebook for local groups.

We are trying to access the ASC pathway. School are hopeless and are using my personality clash with the head as a reason to label my son as naughty and having 'paddy's' - not professional language from a senco imo. We have spoken with numerous professionals who all agree ASC is likely. I've told him that we are seeing specialist people to help with his fidgeting in school. He's ok with that as he knows he can't sit still and can't complywith the inflexible school routine. Wehave said that they will also look at all his awesomeness and amazing skills too. If we get an ASC diagnosis I don't think we will tell him for a while as he won't make sense of it. We just want school to get off his back and extra support to be put in for the areas he needs it. If your son understands the assessments have taken place (and he's older than my boy) maybe he can handle the truth not a few good fen reference at all!! You know him best. Good luck

My son is 16 autistic relatively high functioning just finished secondary mainstream and GSCE's its been a long road but you get their. Give yourself a bit of time to adjust before telling him but I think he should know as it will help him if he is feeling any of the things youve noticed. Its ok to grieve for the child he could have been the future will now be uncertain. But what is certain is that he is still the same little boy hes always been autistic or not you will need to be strong for him. You can do that.

I don’t think we are going to tell DS, for now. If he asks, then I won’t lie of course. But I just don’t know how helpful it would be at this stage, especially when I’m feeling so conflicted. There is a boy in our neighbourhood and he’s known amongst the kids as X with autism. I know many people see autism as part of their identity but fundamentally it’s not my decision to make.

I’m feeling a lot of guilt as I really haven’t given DS the attention he deserves over the past year. I work part-time but nights so I basically see DS for 2 hours between mon morning and Wednesday afternoon. Plus I’m knackered and have a 2 yr old DD also (who is a poor sleeper) I’ve let things slide when I could have been helping him with school work and I do feel bad...

Dont feel bad I have a 6yr old and a 2yr old too that take a lot of work. You are working to provide for him. When my son was diagnosed the local Cahms team offer courses that range from learning more about autism to the specifics of sleep issues and anxiety managment. It might be worthwhile trying to find out if you could attemd some. It will help to meet up with other parents on the same journey who will understand how your feeling.

Sorry you’re having a bad experience with your son’s school Gilda . Unfortunately not all schools can or are willing to meet all learners needs. DS school have actually been very good since P1 and he already attends a nurture class. Due to the school being located in a poorer area, there is extra funding for more teachers, resources etc. so he is lucky in that respect. Glad to hear from others that DC’s are thriving.

It is important to be honest with your child. If they have been involved in the process then he'll want to know anyway. There is generally no actual support for ASD, its all about learning behaviour management strategies, so ask about ASD parenting classes, plus join any parental support groups. I have 2 teenagers with ASD btw & I have ADHD myself, but didn't realise that until my youngest was being assessed 11 years ago. How different my life might of been if i'd of known & my parents had been in posession of the facts!

My ds was diagnosed at 8. We didn't tell him for about 6 months but just slowly introduced talk of autism into conversations and kept it all really positive and then gradually said how he was kind of similar to that and to be honest he just figured it out himself. But he didn't know what he was being assessed for. I think unless he is really struggling and unhappy in himself then tell him gradually rather than sitting him down for a serious conversation.

As for what next well since my ds wasn't having many issues nothing really changed. He didn't need an ehcp and still doesn't and the school carried on supporting him in the fab way they always had. His diagnosis is our back up really for if he ever really struggles which may be the case when he starts secondary next month. Lots of people need loads of support and those are the ones you hear a lot about but not everyone does so don't feel there is a particular path you need to follow. He's no different now to how he was a week ago after all!

This might be a helpful book for you (though I don't know how far the Scottish system is different from the English). It talks about 'what next' after diagnosis, and what to discuss with the school. Takes a common sense approach, quite practical but also discusses some of the feelings and concerns you mention.
www.amazon.co.uk/gp/aw/d/1409176282/ref=cm_cr_arp_mb_bdcrb_top?tag=mumsnetforum-21&ie=UTF8

What happens next? Realistically here, nothing. The school is as helpful or unhelpful as the teacher/senco. For us, it has meant nothing at all.

Hi OP, if you phone the National Autistic Society in Glasgow, they will put you in touch with one of their branches. Their website is also a great source of information.
I found meeting other parents was the best source of support. Good luck x

Hi op, we are a month in to getting a diagnosis of hfa/adhd for 8yr old dd, that was after 3 yrs of assessment through cahms etc, asd came as a bit of a shock but not a total surprise to me.. I haven't really told her yet as I'm not sure how although she is more than aware that she is different from her peers.
I plan on buying a couple books that have been recommended for her age.

Cats have aspergers and dogs have adhd.
There is a UK wide support group for asd and adhd which I've found as a great resource. (ADHD/ASD UK community support group)

There will be local or regional support groups and courses hopefully near you with some research.

Cahms have been great with me with providing information and where I can get support so far, although it's early days so there some time floating in limbo before any support is actually in place.

Thanks for all your replies. I’m taking the weekend to process everything. This has been a rubbish week in general.

I'm in a similar position with my 8 year old ds, getting his diagnosis for autism a couple of months ago. I too worried about telling him about his autism, but he surprised me by totally embracing it. He chose to share it with his class during their "news time" (blindsiding his teacher somewhat!) and often talks about how useful it can be to have a brain that "thinks differently from other peoples."
Even if the diagnosis isn't a complete surprise, there is still a lot to get your head around in these early days. I am trying to take my cue from my ds who seems to be taking it all in his stride at the moment.
Best of luck with with with your ds.

I'd tell him. I think the longer you leave it, the harder it'll be. I've a friend whose sin was diagnosed years ago. The boy is now ten and everyone else knows his diagnosis, he just knows he's different, but not why. I think that not talking about it makes it a bigger thing.

Anyway, Tony Attwood has written loads of useful stuff, including this article with a list of positive traits associated with autism.

www.tonyattwood.com.au/index.php?option=com_content&view=article&id=79%3Athe-discovery-of-aspie-criteria

son

We told DS as soon as we started going for a dx. He was 9 too. We used NAS website and gave him the guidelines for ASD...he said that sounds a bit like me !!!!
Once DX we we're offered a "getting to understand your kid with ASD" course ...we rejected as already have DS with severe ASD.
Ask school for help..if he's not behind educational then they just need to support him in his environment. There are also some great basic books for kids to understand. My DS has real problems with social interaction and communication.
We already have a social worker due to severely disabled DS.

We're in a similar situation but DS is a bit older. We're still getting our heads round it but I would so far say it's helped getting the diagnosis. We're so much more relaxed about some of his behaviours knowing he can't help them.

We've been offered a parenting course in October. DS has also been struggling with anxiety and so I phoned the hospital and am getting advice from one of the specialist nurses on this.

The doctor told DS so we've not had to make that decision. It helps that we have for a long time talked to DS about how he thinks differently to other people. Like you we've had our suspicions for a while.

I feel a bit at sea with it all. I feel it should be clearer what happens next. I'm worried I'm not doing something I should be.

Thanks again for sharing your experiences and advice.

Captain Harvill- yes I feel like I’m at sea with it too. In some ways I’m more relaxed when DS gets frustrated as I know why now. But there is a mixture of guilt and anger there too. And then I remind myself he’s happy and healthy. But then I start thinking about his future and it goes on and on...

The autism team have pretty much discharged us so my first point of call will be the school. Points were raised in the school report to the diagnostic team that I was not aware of. I think I will just let him know about his diagnosis informally over the next few days as he will ask why I’m meeting with the school etc. He already knows he was being assessed and we had a good long chat after the assessment about autism- seeing the world differently, the spectrum etc.

I have just read that it has been proved that Autism is caused by toxins, so many mothers tested for exposure to DDT

crap

Monster I am also in Scotland and just received diagnosis for DS2 a couple of weeks ago. I was fully expecting to feel devastated but in the end I just feel massively relieved - it's nearly 2 years since I first asked the HV to start the process of referral to S&L, paediatrician etc and I was starting to worry that after all this time they would say he wasn't on the spectrum and it was just me. He is a bit younger (6) so I haven't told him yet, not really sure how to do it but I like the idea Titsywoo used of gradually introducing it over time.

DS2 also has a lot of meltdowns - he has a lot of demand avoidant traits. He started school with an additional support plan ported across from nursery so they knew that he needed extra help. School have so far been great in P1 in terms of managing him and having strategies in place to help him so I know that if things go downhill in P2 then there is something going wrong with how they are dealing with things. They use lots of visuals, give him lots of notice for any transitions or changes and help him with the social side of things. A meeting with his teacher might help the two of you work out what support he might need in the class.

I was fortunate enough to do the National Autistic Society's Early Bird Plus course which was really really useful - lots of ideas for understanding and supporting your child. I am hoping to sign up for their Healthy Minds course too. And I have been referred to the local OT team to discuss strategies for managing the challenging behaviour. My local council has a really useful autism support team, do you have anything like that nearby? I plan to apply for DLA because I need all the financial help I can - I am a lone parent and can only work school hours because DS couldn't cope with being in lots of after school care, so no chance atm I could get a better paying job or retrain.

Sorry that was all a bit of a brain dump!