ASD diagnosis, now what? Just been left to it.

[Yellowbrickroadz]

Hi everyone. My 5 year old son received an ASD diagnosis last year and now I’m not sure what to do next? I was handed an A4 sheet of paper with websites on it (many which don’t even seem exist anymore) and just left to it? I’ve had no other input or support from any other service. I think he’s got ADHD too but apparently he’s too young to be diagnosed. Am I missing something here? Should services be getting in touch to support him or should I be contacting people (from this useless sheet of paper).
Feeling really deflated with everything and I feel I should be doing something (or at the very least, getting advice from somewhere). If anyone can point me in the right direction I would be extremely grateful. Just feeling so tired and a little out of my depth. 9 months since diagnosis and nothing. Big thanks xxx

Unfortunately, many people are diagnosed and discharged as you were.

Do your area run an EarlyBird plus or Cygnet course of similar? Scope also run mentoring for parents whose DC have been diagnosed in the last year.

In some areas you can self refer to OT and SALT, if that isn’t the case in your area you can ask your GP to refer.

Are school providing support? If you feel DS needs more support you can apply for an EHCP.

If you haven’t already, apply for DLA and use the Cerebra guide to help you complete the form.

I felt exactly the same when my son was diagnosed 5 ago , you think that’s it we’re sorted and then nothing. My son was having problems at school so we applied for ehcp and that was start of another fight as we were turned down with one of the reasons being it was a recent diagnosis. My son is now at a specialist autism school for kids of mainstream academic ability and gets ot and salt (no speech issues but they work on social communication) through school. There is nothing at all through nhs where we live which I think is common. Any help you do get seems to come through the school system but is a nightmare to access. Best thing I found was joining local fb groups for parents as they’ll know of any suitable activities going on in the area

with ot not all areas cover sensory on nhs, which is what is required for autism a lot of time. Our local nhs doesn’t do sensory so the only ways to access are to pay privately or have provided through an ehcp, which in our area is the la engaging someone private unless the school child attends has own

morph yes, I didn’t mention that so as to keep my points short, but it’s worth trying anyway, and OT can help with other areas of needs other than sensory as well.

Hi there,

One thing that can be very useful is local parent support groups - they often have the best available information on what support is out there, as local authorities are often not good at advertising their services. If you search Facebook for SEND and your area name, or Parents and your area name, you may find some things.

Also check NAS to see if they have a local branch (support group): www.autism.org.uk/what-we-do/branches

Each local authority also must have a "Local Offer" webpage which sets out all the local services available (including e.g. self-referral for speech or OT, short breaks, Early Bird +/Cygnet courses, parent coffee mornings, or whatever else is out there). Some are much better than others but worth a look. If you Google your local authority name and "Local Offer" it should come up. Here is my local one to show you what it should look like. Some are much more detailed than others, and some are difficult to navigate, but there should be some useful information there: www.hackneylocaloffer.co.uk/kb5/hackney/localoffer/home.page

Thanks so much everyone. some really useful information that I didn’t know about.
I’ll certainly be doing some research over the weekend now. Xx

Hi there,

Would you mind telling me what it was that lead to having the assessment. Is it something you noticed or the school. I spoke to my sons school he’s 5 and they mentioned certain traits that he has. Previously they have said he is immature for his age and lacks understanding so they suggested a salt review but now they are going in the direction of possible ASD. My husband is very much against labels as he thinks it will do more harm but I think if he does have a diagnosis then it will provide him with the support he needs.
Perhaps I’m wrong as you’ve been with a piece of paper, how is that going to help you or your child.

xx

Tully it is not ‘a label’ it is a diagnosis. Having a diagnosis will not harm DS, what rubbish. Would DH feel the same about a physical condition?

Having said that, support in schools is based on needs rather than a diagnosis.

A SALT assessment can be part of the ASD diagnostic process.

Tully, it will not do more harm.

The real harm lies in a child not getting a diagnosis or adequate support. The consequences of that can be huge.

Often husbands are not keen on the idea of labels and hold back the assessment process. It can be quite a drain on your resources. It took us a long time to decide to move forward and in hindsight this was 2 years wasted where ds didn’t get access to help. If you don’t get the formal label your child will be given other unkind social labels like rude, aggressive, unkind etc and in many ways these are worse. Good luck

It's not just the rude and unkind names knotty, which Ds unfortunately had in abundance. It's the MH difficulties that come from being undiagnosed and unsupported. Ds has significant mental health difficulties and so much of it stems from him not getting the support he needed and a late autism diagnosis.

This was a child that the school flagged as a concern at 4. But they were not proactive at all and we just buried our heads in the sand. Unfortunately Ds has paid the price for this. I would advise any parent to look into assessment if concerns are flagged. The early any support and intervention can be put in place, the better.

@Punxsutawney yes absolutely. good point

Hi Tully87. You are more than welcome to PM me if it helps. I’m just getting my son ready for bed but I’ll reply later. Xx

Ok. So if I’m really honest with myself I started to wonder If my son was autistic when he was really little, about one. I did the usual Google search, asked health visitors and Drs etc but got a mixed response. It was his consultant who actually referred him when he was two as he thought my son was showing some traits. It took a number of weeks for the first initial assessment and the Dr at the time was unsure. However, she decided to refer him for further assessment just incase. It took another 3 years until he was finally assessed and diagnosed.

I didn’t want him to be assessed to be honest as I wasn’t ready to accept that he did have ASC. (By the way, I much prefer this ‘Autistic Spectrum Condition’ rather than ‘disorder’)
When I was told that he was autistic, I burst into tears. Why? Fear of the unknown I guess. But what I hung onto was the fact that he was still the same little boy yesterday as he was today and now I knew there was a reason behind the fact that he struggled with certain things.
In regards to your husband not wanting him to have a label. I get that. I was the same (& still am to a point but for different reasons now).
However, now I’ve come to terms with things, his diagnosis is the best thing that could have happened really. The school have put many things in place to support him. He is no longer expected to cope with a rigid curriculum the same way as his peers do. My son is mainly sensory seeking and he has wiggle breaks and sensory breaks built into his day. He does not have an ECHP (rejected twice now). He might need one in the future but the school are happy he can cope with what they provide and he does.
I have become an advocate for him and to be honest, his ASC diagnosis has only served to help him.

I am well aware that early intervention is important which is why I originally posted this thread. It is frustrating that I have had no contact from other services but the diagnosis has certainly helped him at school. My son has just started some clubs and having the diagnosis has really helped here too.

xx

Did you appeal the EHCP refusals? The majority of appeals are upheld. Some LAs refuse as a matter of course. EHCPs can provide support not otherwise typically available.

The school didn’t have to, and shouldn’t have, wait until for a diagnosis to make adjustments and provide support.

Did you look in to whether you can self refer to other services in your area?

Yes it was appealed and declined. Also applied for an IPRA. Also appealed that.
The school had put things in place before the diagnosis.
By self refer do you mean things like speech therapy and occupational therapy?
I did refer to speech and he was seen when younger (that another story) but has now been discharged.
No support at all for occupational therapy in our area. I was sent a load of paperwork and exercises. 🙈

That’s a shame SENDIST refused to assess/issue. Did you get independent assessments to appeal? They should have given you a good steer on DS’s needs and what support will help.

IPRAs are rubbish anyway as they aren’t legally binding.

Yes, self refer to SALT, OT, CAMHS - whatever you feel necessary. You could also ask social care for assessments too. A carer’s assessment for you and an assessment via the disabled children’s team for DS.

I’m not sure of all the correct terms etc but we had this online panel appeal when the ECHP was rejected. They were a real dishonest bunch. They rejected it due to lack of evidence from support services. We didn’t have the evidence as everything had shut down during Covid so no support services. When we appealed with the school with extra evidence later, still rejected but got told he would def get an IPRA. Then that was rejected too. A broken system.
I’ll look into the other things you mentioned like CAHMS. I didn’t know about a carers assessment or assessment from disabled team (or even that such a thing existed).

Was this an appeal to SENDIST or did you just appeal to the LA? I think from your posts you just appealed to the LA? In which case you should reapply and if refused appeal properly to SENDIST and get independent assessments.

I don’t know. I was guided by the nursery/school. We spent 2 years applying & appealing. Won’t go through it again unless the school recommend it. The SENCO at my sons school has a reputation for being one of the best in the area (from so many different professionals I have spoken too). She doesn’t believe my son will get one so I’m not going through it again unless things change.

You would know if you had formally appealed to SENDIST as only a parent can do that, not a nursery/school. So it doesn’t surprise me your appeal was rejected if you were only appealing to the LA as it’s them that made the decision in the first place.

That makes sense. I was pretty much told by someone from the LA on the phone during this process that there is only so much money in the pot and my son just doesn’t have enough needs (or however they phrased it).