Aspergers AND Tourettes?!

[HelzBelz]

So my 10-year-old daughter has stimmed in varying ways for most of her life, and it's got worse over the last few years. Her stims are usually gross motor movements and for the past 8 months she has had a jump, where she jumps quickly enough for her feet to connect with her butt. This is worse in the afternoon and evenings when her stimulation threshold has been reached. We went to the doctor today as the constant involuntary jumping (easily 50+ in the afternoon and evenings) is resulting in sore ankles, hips and calf muscles, as well as occasional bruising on her butt if she wears the wrong shoes. I wanted to explore what we could do medically as at home she has calming techniques, but that only helps briefly.
Our doc is questioning if she has 'movement Tourettes' as well as Aspergers. I thought she had stims (common, and her Aspie brother has always stimmed) but he said they were a bit different. He's confident there will be medication to help and is sending her to a pediatric specialist, but I've not connected the two diagnoses before. Anyone here had any experiences or ideas about how this would be different, and if this would present more challenges? Feeling a little overwhelmed with this new thing being thrown into the mix.

 

[xudo]

I have both, and there are a few others here too who have both ASD and Tourette's. I would say that Tourette's for any one, whether NT or on the spectrum, causes more challenges.

I'm not trying to say your doctor is wrong, but the diagnostic criteria for Tourette's states that you have to have both motor and vocal tics.

From the DSM-5:

"Tourette’s Disorder 307.23 (F95.2)
A. Both multiple motor and one or more vocal tics have been present at some time during the illness,
although not necessarily concurrently.
B. The tics may wax and wane in frequency but have persisted for more than 1 year since first tic onset.
C. Onset is before age 18 years.
D. The disturbance is not attributable to the physiological effects of a substance (e.g., cocaine) or
another medical condition (e.g., Huntington’s disease, postviral encephalitis)."

 

[HelzBelz]

...the diagnostic criteria for Tourette's states that you have to have both motor and vocal tics...[/QUOTE]
Would that include endless involuntary coughs/clearing of the throat (usually in a pattern) or sudden breathing out the nose? She's never had involuntary words, which I've associated with Tourettes in the past, but hadn't considered vocal/oral/nasal sounds the same. I don't know how this would be different from stims?

 

[xudo]

Would that include endless involuntary coughs/clearing of the throat (usually in a pattern) or sudden breathing out the nose? She's never had involuntary words, which I've associated with Tourettes in the past, but hadn't considered vocal/oral/nasal sounds the same. I don't know how this would be different from stims?

Yes! I don't shout out words, but I clear my throat to the point of soreness and I have had coughing and sniffing as vocal tics previously. People tend to assume it's shouting words or bad language, because this is what is always shown in the media, but only roughly 10% of people with Tourette's have coprolalia, which is the shouting out of swear words/inappropriate words.

I assume you're in the US? Maybe have a look online to find a Tourette's society or association. In the UK we have Tourette's Action, who are a charity and also have a wealth of information available, including consultants who can diagnose.

Tourettes Action

I would guess there's some equivalent where you live

 

[HelzBelz]

I'm in New Zealand, but have done some reading as I know very little about it. I have an autism and aspergers coffee morning tomorrow I might go to, and see if there is any local experience. We will wait and see how things go at the pediatric appointment and go from there. I'm feeling a little overwhelmed but we will get there. Thank you.

 

[DaRKMsOul18]

l don't know how to help much...

I might have mild tourettes, but it only flares up in periods of stress!

 

[HelzBelz]

Thanks, my girl (as with aspie stims) struggles more when stressed or anxious too.

 

[xudo]

I'm in New Zealand, but have done some reading as I know very little about it. I have an autism and aspergers coffee morning tomorrow I might go to, and see if there is any local experience. We will wait and see how things go at the pediatric appointment and go from there. I'm feeling a little overwhelmed but we will get there. Thank you.

This may help: Tourette's Association of New Zealand – Supporting New Zealanders with Tourette's