Not quite Autism...

[vixen1]

Hi all,

My DS has been seen by a Neurodisability Specialist for the last year or so and is having various treatments including Speech Therapy, Physiotherapy, Occupational Therapy and Portage.

He has delays in all areas and many peculiar playing habits. He also has Hypotonia which causes him to fall and injure himself all the time. All of this really does have a profound effect on our whole family yet he can't be diagnosed with anything because he's too sociable.

We saw the Specialist yesterday and he's great. I'm just feeling increasingly frustrated that it seems like we'll never get any sort of diagnosis.

I feel so upset when DS has a public meltdown or throws a toy in another child's face. I'm at a loss as to what to say to people. I guess I feel that at some point I want a diagnosis from a selfish point of view becasue it would be so much easier to say to people "sorry, he has X".

I don't really understand how someone can have a condition that affects them so fundamentally yet I feel that professionals are basically saying he's not "bad enough" to be Autistic.

He's not got Autism but niether is he Neuro Typical. So where does that leave us??

I would so much love to hear from people in the same postion as us. I really don't know where to go with all this and I'm exhausted from analysing all the time.

Am in same situation with my DD, except she regressed last year..she has always had delays though.

She might get an ASD diagnosis but at the moments she is said to have "traits".

If I have to I just say she has special needs.

It is probably obvious as she makes strange noises and flaps a lot though.

I don't bother explaining her to strangers now though, am starting to just not care what people think, it's hard though.

Vixen1, I have a DD with similar issues, but I don't think they are saying 'not bad enough to be autism'. Because Autism is just one part of a spectrum. ASD can be very 'mild' in that the difficulties displayed are almost hidden day-to-day, ranging to very 'severe' and pervasive.

However, there are lots of children who have difficulties which have elements that are similar to the difficulties of a child with an ASD, but that overall they don't fit well enough into the 'triad of impairment' to warrant a pure ASD diagnosis.

Has your DS had an MRI scan yet? DD1 had one and it showed that her brain was slightly malformed all over, which probably explains her condition (she also has epilepsy).

Strangely my DD had a normal MRI scan as well.

it's frustrating.

Hi Tribunalgoer,

I think you've replied to another thread I had going about Dyspraxia (a couple of weeks ago that's what they thought we were dealing with) so thanks for your ongoing support.

Yes, I see what you mean about a Dx being a hinderance too, that's a good point.

I'm just feeling a bit down about all of this and I don't really know why. I'm so pleased he's getting all the services he needs, they really have been fantastic. We've even just started to use the Wilbarger technique with him which I'm pleased about.

He's only 2 and a half which is a good reason in itself why he's not got a dx.

I guess when anyone is faced with these kinds of challenges as a parent it's only natural to want to seek out others in a similar situation otherwise it can all feel very lonely. I guess that's another reason for (selfishly) wanting a dx. But that's also the reason for this thread - I'm desperate to hear from others!

But you're right, a DX at this stage isn't going to help him and may even hinder him.

I also soemtimes need a kick up the backside to keep it all in perspective - we're so lucky in so many ways.

Think I'm just feeling tired and grumpy today...!

Fanjo and Lougle -

Sorry I mised your posts while typing my reply.

Thank you! It's so nice to hear from others!

How old are your DDs?

Fanjo - In what areas did she regress?

Lougle - Damn, I meant to ask him about an MRI - I knew I'd forgotten something. Maybe I should phone and ask or do you think I should wait until our next appt in Dec?

my DD is 3.9..she regressed in speech and social skills really..went from having hundreds of clear words and phrases to slurring everything. Has had lots of tests which are thankfully clear so far. I think she has epilepsy but she has had 2 clear EEGs so far, hoping they will do more!!

Lougle - Yes, I think that's what they're saying - doesn't meet the triad of impairments. But I thought that would only preclude Classic Autism and something like PDD-NOS would still be a possibility? But our specialist is saying he doesn't see and ASD which includes PDD-NOS doesn't it? I'm so confused - no wonder I'm knackered!

Fanjo - My DS makes funny noises (usually like baby grunting) and flaps around a lot. The specialist said he thinks DS may start drawing attention to himslef sometimes because of this. I try not to care what other people think but it is hard when you're at a party with friends of friends for example. I can almost hear them gossiping about my "poor parenting techniques". I try to ignore it but it does hurt, especially when some of those people are friends who aren't being nasty with it, they just don't understand...

I am probably just in denial but I quite like not having a diagnosis and just addressing DD's area of weakness.

vixen - it is hard, I am very self-conscious anyway and wherever we go DD shouts and flaps.

I have heard you develop a thick skin and its true.

I think as DD has got older it has become more obvious that she has SN, so people are a bit more forgiving. There is that stage when they are younger where noone realises and judges you though.

My FIL said at first that i had caused DD's delays by being overprotective and spoiling her.

Fanjo - wow, that's another eye opener about the EEGs. I thought they were fairly conclusive. DS had one just before he turned two which was clear and I just thought that was it. He does still "zone out" quite a lot which has made me wonder. I even caught him doing it on videao once... he was playing quite happily and then it was as if soemone switched him off for about 10 long seconds...

Trouble - The OT and Portage visitor said they thought he was Dyspraxic and I agreed that he certainly seemed to be. However, over the last few days I've noticed that he actually doesn't have any issues with motor planning, it's just his muscle strength, tone and co-ordination which is a problem...

well, I suppose unless they are having a seizure at time of EEG it would be clear..I have heard of kids needing 4 or 5..5 day video telemetry was mentioned for DD but since then nothing.

Fanjo - Blimey, that's exactly the type of hurtful comment I mean. What other symptoms does your DD display? It's interesting that I find as some aspects develop then other issues arise. For example our DS has had a speech explosion recently. His vocabulary and communication skills are great. However, since that development I now see that he talks as if from a script and sounds quite monotone and repetitive. I'm hoping these are just features of his learning rather thatn any long term problems.

Trouble - I don't really know if it's still a possibility or not...

DD doesn't pay much attention when you talk to her, shakes her head and flaps her hands, shouts a lot, can't really speak, has trouble climbing stairs and falls over a lot.

she is also extremely restless/hyperactive.

she has bad motor planning problems too, it seems really hard for her brain to get her body to do anything, like pick something up..like a severe Dyspraxia.

but she is quite bright underneath it all, we think. Sorry for all the posts, I keep thinking of things!!

Aww, bless her. So howcome they haven't diagnosed something like Dyspraxia then? Sorry for all the questions, I'm just trying to learn as much as I can about all this stuff...

She sounds very like my DS although his symptoms sound milder.

You say that she regressed over the last year... what were her difficulties before the regression? She would have been about the same age DS at that time...

i don't think they will diagnose dyspraxia until she is older.

At the moment they are wanting to test for myasthenia (muscle weakness) but the tests are invasive and my gut feeling is it isn't that, will discuss with the consultant once we get that appt through.

Before the regression she had motor delay (crawled 13 months, walked at 2) but nothing too major.

but don't start worrying your DS will regress, my DD has neurologists stumped as they have never seen such a case!

yes, that's what the SALT said, that she had trouble once she started to try to express herself properly, she had lots of nouns. Her regression wasn't linked to MMR, although we are being hassled to have her pre-school booster and I'm worrying about it.