Autism - your experiences

[buryboy]

Thank you all for your complete honesty
Agreed Hexagon you do amazingly well coping with your conditions
Lisa - yes the plan is she will be assessed
Do I think she is on the spectrum ?
I really don't know
She is very set in her ways and hates deviating from routines , has OCPD , but apparently not OCD, but when her eating disorder is at its worst , she just has a ' look' that makes me think she is . Hard to describe , just a frightened, insecure, vacant kind of look.
But it comes and goes which makes me think the opposite , that it is just associated with her poor mental health.
Because I don't have anyone to compare to, and don't know too much about it, I find it very hard to evaluate myself.
She does things like put things behind the door to stop us getting in the room when she knows it's time for food , the wardrobe thing I mentioned on the big thread- could these be signs ?

[Lisa123wm]

OP - autism affects every aspect of a person’s life and the signs are there from a young age. Most see the signs at toddler age (hence the belief in some that the MMR was a trigger), because that’s when developmental milestones etc are delayed and alarm bells start ringing with health professionals.
What was your daughter like as a younger child?
Did her behaviours start later along with her eating disorders? Or were they there before?
The vacant/closed off look I totally understand, but that could just be your daughter shutting everything out during a bad episode.
How is she socially? Especially with people she doesn’t know?
Is she able to explain how whe feels?
Have you heard of Pathological Demand Avoidance (PDA) - maybe worth having a little read?

[jndt]

My son, 10, has autism (my nephew may have ASD too but not diagnosed) and my uncle has Aspergers. They are all different but have some similarities.

My son struggles with sound and changes that he isn't expecting - we prepare him for everything and he constantly asks the same questions, today he keeps asking about our picnic in the garden as he wrote down what we are all having days ago and he likes to check the order of things.

My son also has executive function problems and processing delays so his organisation isn't good. He has problems switching off - he struggles to get to sleep.

[Lisa123wm]

Originally Posted by jdndt

My son, 10, has autism (my nephew may have ASD too but not diagnosed) and my uncle has Aspergers. They are all different but have some similarities.

My son struggles with sound and changes that he isn't expecting - we prepare him for everything and he constantly asks the same questions, today he keeps asking about our picnic in the garden as he wrote down what we are all having days ago and he likes to check the order of things.

My son also has executive function problems and processing delays so his organisation isn't good. He has problems switching off - he struggles to get to sleep.

See more...

My cousin has autism, my uncle has Aspergers, my nephew is suspected to be on the spectrum, my aunt has severe OCD, and as I’ve already mentioned, I too have OCD (and also autistic tendencies).
Every person I know with some form of autism, has other members in the family on the spectrum too.

[hexagon]

Originally Posted by DisneyDaffodil

Honestly Hexagon, I completely admire you. We’ve chatted a few times on here and I’ve been so impressed with how you cope with everything. Your insight (above) into autism is incredibly interesting and very helpful to anyone with a family member with a diagnosis of autism. You have been so helpful and honest, not only on this thread either.

Also to Buryboy, I do hope things improve for Emma and she gets the help she needs

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Thank you. That made me smile.

[buryboy]

Originally Posted by Lisa123wm

OP - autism affects every aspect of a person’s life and the signs are there from a young age. Most see the signs at toddler age (hence the belief in some that the MMR was a trigger), because that’s when developmental milestones etc are delayed and alarm bells start ringing with health professionals.
What was your daughter like as a younger child?
Did her behaviours start later along with her eating disorders? Or were they there before?
The vacant/closed off look I totally understand, but that could just be your daughter shutting everything out during a bad episode.
How is she socially? Especially with people she doesn’t know?
Is she able to explain how whe feels?
Have you heard of Pathological Demand Avoidance (PDA) - maybe worth having a little read?

See more...

She was a slow developer initially , especially walking which was 20 months, but then other stuff was generally fine as she was growing up She has always been shy / introverted. I remember finding out that after two years at high school, she literally hadn't spoken to the lad she sat next to in her maths lessons.
She doesn't have many friends , her friends are quiet types but against that she seems to have dealt remarkably well dealing with the public at M&S
The biggest problem for me of her eating disorder is her inability to tell us why she can't eat . Or what has caused changes . It makes it so hard to make progress but then again there are days when I cry for no apparent reason.
She is very slow at everything , because it has to be perfect .
My wife had epilepsy while carrying Emma and we do wonder if that has impacted but no doctor /specialist has ever really been interested

[Floridatilly]

Originally Posted by buryboy

Thank you all for your complete honesty
Agreed Hexagon you do amazingly well coping with your conditions
Lisa - yes the plan is she will be assessed
Do I think she is on the spectrum ?
I really don't know
She is very set in her ways and hates deviating from routines , has OCPD , but apparently not OCD, but when her eating disorder is at its worst , she just has a ' look' that makes me think she is . Hard to describe , just a frightened, insecure, vacant kind of look.
But it comes and goes which makes me think the opposite , that it is just associated with her poor mental health.
Because I don't have anyone to compare to, and don't know too much about it, I find it very hard to evaluate myself.
She does things like put things behind the door to stop us getting in the room when she knows it's time for food , the wardrobe thing I mentioned on the big thread- could these be signs ?

See more...

I am no expert what so ever but when i look back at my son it was quite obvious there was something different/special about him;
As a baby he was very quiet, content. He was the perfect baby.
As the months went by and his peers were reaching milestones my son did not. He would just gaze and smile.
As a toddler he could not talk and would sit on his own with his little cars lining them up bumper to bumper along the edge of the rug. All in perfect formation.
At the age if three he started to make noises that mimicked words
Like a baby does, da da da da, doh doh doh etc
He was under a speech & language specialist and still is.
At primary school his teacher kindly said that it was like the lights are on but no one is home 🙄

What was your daughter like as a baby/child? Where there any alarm bells?

[mandco]

Hexagon thank you for posting your post is very informative as its really hard for those of us who are neuro typical to understand what its like for people with autism.

Buryboy it is much harder to diagnose autism in girls as they are better at masking - copying other girls to fit in so its is possible that your dd is on the spectrum. Puberty and all the things that come with that can be esp difficult for those on the spectrum which can result in other symptoms becoming more extreme.

My ds has autism and its been a huge learning curve both in understanding what it means for him specifically and how we need to change what we do to accommodate his needs. There are many things that the average person takes for granted that are confusing or even distressing for people on the spectrum. Its been hard work learning to do things so much differently to what we were used to but the effect on ds behaviour has been significant. We have good and bad days/periods but learning to understanding what ds is going through and how to support his needs when things are difficult has really helped get us though the harder days on a normal basis.
Issues around food are very common and hexagon described what we go though with ds to a tee. I have found that since we've been in lockdown his issues with food have become really extreme and he is hardly eating at all. Even our go to they may be junk food but at least he'll eat them foods are being rejected.

[DonnaD]

As Princess Pixie has said, girls can be much harder to diagnosis as the standard diagnosis criteria were developed by observing boys. The signs in young girls can be very different from boys and very easily ignored. My own daughter only had sensory issues and a few quirks until puberty. No longer fitting in at secondary school age is a very strong sign for girls. My daughter became a completely different person and hid her problems very well.

As suggested, looking at Facebook groups for female autistics will reveal numerous stories of not being diagnosed until adulthood.

[Button17]

I was taught that if you meet one person with autism, you have met one person with autism. It can present in so many different ways that everyone is unique and has their own issues.

Hopefully with a diagnosis, if that happens, your daughter will grow in confidence and she can come to some peace and understand of herself. Good luck xx