The Official Diagnosis of our son not having Autism
It was always going to be hard to accept whatever the Paediatrician said to us, the road to an official diagnosis was always going to be rocky. I had prepared to be upset when it would be announced that my child has Autism (even though I have been having to stop and correct people for saying it). Autism it is what people have heard of, isn’t it. It’s what people know and it feels kind of safe inside that label. When the official diagnosis came back as our son not having Autism it was initially hard to accept. This was despite the fact that I had been prepared that this maybe the case (see my post on Sensory Processing Disorder).
Why an Official Diagnosis of Autism is what I thought that I wanted to hear
Most people’s reactions were that it was good news – after all Autism is a lifelong condition that no-one particularly wants for their child (see my post on differences of opinion about whether people would want to take it away if they could). But the fear and uncertainty that an alternative diagnosis brought really made me want to fight against the outcome. Our oldest has Asperger’s Syndrome so we have an idea of how to deal with things, what we can do to help, where to go for support. Plus a diagnosis of Autism would have made it easier to remember what the official diagnosis is (but that is NO reason to want it to be Autism). I guess that, for me, it feels so much ‘like’ Autism that it just feels like he will not get the associated help but still have problems associated with his disability.
The Official Diagnosis
The official diagnosis was that his behaviour could not be explained by autistic spectrum disorder that a diagnostic formulation at the present time is one of language delay/disorder, developmental delay, immaturity of attention, play and social/emotional development.
What the Official Diagnosis may mean to his future
This may now affect so much including his statementing, his financial help, the way he is treated, his support in school, how people react to his behaviour, and so on. But for me the difference is one of knowing where to look for the support, . It is so much easier to find support groups and courses for children on the autistic spectrum, and now he isn’t in that category I am not sure if I can, or should access them. The situation is still the same, the same advice still works, but somehow everything seems different now. I am grateful that the school are doing all they can, he is coming on leaps and bounds. So far the official diagnosis has not changed that. But they are funding him the extra hours, expecting a diagnosis of Autism I presume. I’m not sure if at his Statement review he is still not awarded full time support whether they will be financially able to keep that up. I’m also concerned that he has a statement categorised as cognitive and hope that this official diagnosis will be able to change that to communication and interaction.
Staying positive after the Official Diagnosis
Whatever happens the official diagnosis has been made and there’s just no point getting upset about it. He doesn’t fit the Autism umbrella but they have been clear that is not down to parenting or behaviour problems. They have identified what areas he needs help with and there is support in place. This Christmas he has been amazing. He has developed so much and coped so well. It hasn’t gone without problems (his official diagnosis did not say there would be no issues) but watching how far he has come is just amazing. He is such a happy boy and really made this festive period special. We have so much hope for his future, even though the official diagnosis was not what we expected to be, and we do not fully understand what we are now dealing with.
What happens after the Official Diagnosis
I do not know whether he will later have another diagnosis, as feels is the case in how we were spoke to and the fact that the diagnosis says “at the present time.” This decision was made by a second paediatrician through a D.I.S.C.O. and we have to go back next month and see the original lady we have been speaking to for over a year. I’m not sure what will happen then, and whether she will add on any sort of Sensory Processing Diagnosis. What I do know is that there are suggestions for help, and that the best way to help is to play with him with something that he is interested in. This is important to me, because it doesn’t really matter what the label is, as long as we know how to keep moving him forward. We have a new speech and language therapist coming out to see him (and she also works at the communication and interaction to centre we wanted him to attend) and am sure the school will continue to support him and us.
If your child has been unable to get a diagnosis then you may be interested in SWAN UK , which is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions.
This is NOT a sponsored post.
That must be hard to come to terms with, but I guess the positive is that he is making progress. Isn’t the important thing that any support is for his needs, not his diagnosis? I hope he continues to make such good progress in the future. x
Yes it is, thank you. I think my fear lies in the fact that this support may be taken away, or not as easy to obtain in the future because he hasn’t been classed as Autistic – which, unfortunately, can make such a big difference. But yes, you are right in that I am focussing on the here and now and he does have support in place and it’s making an amazing difference. In fact we are lucky we have managed to obtain so much support for him already.
Thank you for reading and your comment, I really appreciate it xx
This is really a tough one – of course you want your child to be “normal”, but equally, you deserve the support and help that extra developmental needs need. I hope you manage to find your way. I think you are a fantastic mum and are an example to us all.
Glad to hear he is making great progress. I hope the schools support continues whatever the dignosis. I know just what you mean about autism, even though my son has no formal diagnosis, I still use the term ‘aspergers’ on occasion, particularly to explain his social discomfort at family gatherings etc- people know the term so well now that they immediately accept his ‘quirks’ with no further comment. My son has come so far in the 7 years since we got our vague and provisional diagnosis, but we may still have to return to have it looked at again in the future too. Best wishes and love to you and your boy xxxx
I feel for you on this, as I can understand why you feel it would be easier to have the ‘label’. In our case, the autism label did get us support we needed, even if it wasn’t exactly a specific enough diagnosis. It’s great though that you are getting support anyway, and it’s true that the support should be relevant to the child and not the label – doesn’t always work like that, I know. I hope that what is already in place can be carried on with and you don’t feel ‘set adrift’ – I would definitely say you can still turn to the same ‘autism’ groups for support for you too. As you said, the situation and behaviours are still the same, it’s a bit like splitting hairs when picking up on what they call it. Other Special Needs mums will understand for sure x
I hope you get some sort of answer .
Hugs for you x
It must be a strange kind of relief and worry all at once. Relief that he doesn’t have one thing but worry on the challenges you may face. You are such a committed and supportive mum though. That bit is SO obvious. I think your boy will prosper and bloom with a mum like you. I wish you all the best and more for the new year xx
It’s not easy either way, is it? But I can imagine that it must be incredibly hard not knowing what the future holds, if he will receive the support he needs and what you can do to help him develop to his full potential. I’m wishing you guys all the best of luck on journey x
It must be difficult to adjust to. The diagnosis seems so vague I guess it’s difficult to know how to approach it. I’m sure you will find ways to give your son all the support he needs. x
Oh goodness, I can imagine how you are feeling. It’s awful to have the dilemma of wanting and yet obviously not wanting a label for your child.
I wonder if this is why I often “give up” on the fight for an official diagnosis for Danny. While he gets a lot of help due to his disability (his heart condition), and an Ed Psych and a Child Psych say he has Aspergers, I do wonder what would happen if we pushed for an official diagnosis.
Currently, as an”Undiagnosed”, we get a lot of support in school which fits his behaviour and our local NAS allow us to attend the events as his behaviours fit in with the others there.
However, although the diagnosis is not there, your son’s behaviours and difficulties still are, so he still needs to continue to get that support and I know that with you as his mother, he still will. 🙂
Good luck.
Wishing him and you all the best.
love
Claire
xxx
It sounds like you had a wonderful Christmas. I really feel for you with the diagnosis, it must be so difficult whatever the outcome. I hope you still continue to get funding and the support that you need as a family…
I never knew about SPD so I appreciate your sharing information about it. So happy to know that your holidays went so well, and I hope you find a support group that suits you.
Such an interesting post, I’ve never heard of this condition. I wish you and your family all the best
I think it’s so hard, you prepare yourself for the inevitable and then it doesn’t happen, and you had it planned out but suddenly you aren’t really sure where you’re going. I hope he continues to thrive and that his delays are only temporary, and that the next few years you continue to get all of the extra support that you all need x
You have such a wonderful attitude, even though it just be hard coming to terms with a fiagn
Sorry – pressed enter too early. I meant with a diagnosis you didn’t expect. It’s good to hear your son’s school is so supportive. Love to you all x
Totally understand why that diagnosis wood have made things easier for you, even though as a parent it’s also not something you want. I hope the school continue to be as supportive x
Sometimes I think it is definitely easier (not sure if that is the right word) to have a label. And not just because it is sometimes easier to access services and support with that diagnosis, somehow, for some people, it makes something easier to deal with (or, at least, more of a known quantity). J’s diagnosis came as big shock, and obviously not something I wanted, and only later did I think about what it would mean to have a genetic condition and not have a diagnosis.
I don’t know an awful lot about autism, but the way it was explained to me was that you could have characteristics usually associated with the autism spectrum without being classified as autistic.
I do hope this doesn’t come down to funding and that you get the support you need (and, frankly, if you can, wouldn’t worry too much about accessing whatever support you can regardless of labels). Stay positive.
Thank you all so much with your support. I think I just need to focus on how well my oldest has come on and I was blamed for his behaviour until he was 10 so had no support. My youngest is at least getting help and I just need to stay positive because I see what happens when people let the negative take over.
I feel like I could have written so many parts of your post… Having a label that everyone knows and recognise and already have a set of help systems in place for is so much easier than trying to cope with a different label that no one knows or understands. As my school explained to me, they have resources for these kind of things even without the official statements, it’s just easier when they have them but not having them should’t necessarily mean they will stop the extra support… He is already getting it, they know how much he progressed, why should they stop it now? Maybe I’m naive but I think they will continue with giving him and you as much as they can…
As for the support groups, you shouldn’t not be in them if they help you just because you don’t have the “right” label. They will understand most of what you are going through like nobody else can.
If you need someone whose child doesn’t have the “right” label and doesn’t fit into any group, I’m here for you 🙂 xx
That is awful. I can’t imagine how difficult this must be to take in. I hope you get the right support . Sending hugs xxx