Published on 12, July, 2020
Hello all, I just wanted to say I'm here, feeling alone and confused (and if possible, guilty too)
I am a 35yr old married mum of 1 wonderful miricle little boy and am struggling to come to terms that one of my worst fears is coming to light, I suspect I have been ignoring the signs for some time but now have to face the possiblity that we have another issue and that is ASD, Aspergers or ADHD. I say another issue since my son also was born with a heart problem and currently benign CF (there is a chance it could develope into active as he gets older).
There isn't a day goes by that I'm not greatful to be his mum but I already feel guilty for passing him the burden of CF and regardless I will feel guilty for whatever the outcome of his diagnosis now.
I just feel so alone. Is there anyone else out there like us?
Asperger's and HFA (high functioning autism) are both autistic spectrum conditions. They are a neurological difference that you are born with. It is thought to be genetic although science does not yet know whether there are any environmental factors that could contribute or trigger it. It is also possible that not all forms of autism come from the same cause.
You cannot cause autism by things you did when you were pregnant (presuming you didn't take any harmful drugs) and there is nothing you could have done to prevent your daughter having autism.
As she is high-functioning she will have a normal IQ and is likely to be talented in at least one area. She may have an exceptional memory, she may be above-age in academics.
The things she may struggle with are anxiety, things changing (especially unexpectedly) and sensory issues. There is a lot you can do to help with sensory issues. If she gets stressed when there is too much going on, you can try to avoid noisy, chaotic places completely or go when they are quieter. You can get her earplugs and if she has visual sensitivity she could wear tinted glasses or sunglasses when out.
Don't force her to got o children's parties if she doesn't want to, as it's likely she finds them overwhelming. Watch her to learn what triggers her behaviour.
You can use PECS cards (if you Google PECS it will explain what they are) an dsocial stories to help her learn more appropriate behaviours. You can get emotions PECS on a keyring for instance, which your daughter can pick the emotion to show you how she is feeling rather than acting out. If she feels you understand what she wants and that you will act accordingly she is likely to calm down. You can't avoid all meltdowns of course, for someone with autism existential stress sometimes needs an outlet.
She may be better supported in an autism unit or special school for high-functioning children rather than mainstream. If she is in mainstream (or going to mainstream) you can apply for a statement of special educational needs through your local council's SEN department which will ensure she is legally provided with the support she needs. She doesn't have to have a diagnosis to apply for this either. She could likely get at least School Action or School Action Plus which the school puts in place to support her. If she gets a statement it will probably have an IEP (individual education plan) to specify her needs.
If you are feeling overwhelmed and need a break, your local social services department can do an assessment of needs of your daughter and you as her carer so they can arrange short breaks/respite etc. according to need.
It's not the most awful thing in the world to be on the autistic spectrum. I have Asperger's and I have 2 daughters age 8 and 12 both on the autistic spectrum.
Let me reassure you, autism is not caused by diet, coffee, going dancing when you are pregnant or anything. It just happens. Now you know, you can learn from your daughter what she needs and do what you can to put those things in place. It doesn't help to look back and regret, look forwards on how you can make her life the best it can be.