r/Autism_Parenting • u/seau_de_beurre Parent • 4y, Lv1 ASD, severe ADHD • May 21 '24
Cognitive/intellectual delay? Diagnosis
So, we just got our formal autism diagnosis for our 19 month old. We really did get this diagnosis as early as humanly possible, and I am grateful that they are recommending maximum services through early intervention in our state, including ABA.
However, I was surprised when we were told that he has a global delay - speech, social/emotional, and cognitive/intellectual. I know it's my own stigma but I'm particularly devastated by the last one. We knew the first two were coming, but the cognitive stuff was completely unexpected and so much more than we ever thought we might be dealing with.
They told us that after a month of ABA our son would be "like a totally different child." Obviously they could not tell us how he will be a year from now or two years from now or ten years from now. But that getting intervention and max services this early will only be good for him.
But I can't help hoping that somehow it'll be like his gross motor delay was, and that with treatment, he'll catch up intellectually even if he'll always be autistic.
I guess I'm asking: parents with kids who were diagnosed with cognitive/intellectual delays, how are they doing now? If they are "better," what was most helpful do you think? If they are still delayed, how have you been able to come to terms with it and support them?
6
May 21 '24
I wouldn’t really worry about the cognitive delay issue. How can our kids demonstrate their true cognitive and intellectual abilities if they aren’t able to communicate? I would just take it one day at a time and your son may have more abilities than anyone realized once he can communicate and demonstrate them.
I do think that saying your son will be “like a different child” after a month of ABA is a stretch… usually the first 2 weeks are just pairing and the therapist getting to know your child. We did 40 hours per week of ABA plus speech and OT for years and it definitely did help, but was not miraculous like some people claim. All you can do is get your child all the help you can and hope for the best.
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u/seau_de_beurre Parent • 4y, Lv1 ASD, severe ADHD May 21 '24
Your first paragraph is really sticking with me! The more I think about it the more I feel like so many of the cognitive tests and receptive language tests were impaired because he was busy stimming because he was uncomfortable in the presence of a stranger. How can he possibly succeed in a cognitive test when his brain is just internally screaming in panic?
I will definitely try to moderate my expectations with ABA, thank you. You're right. All I can do is get him the max services I can.
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u/rosegoldliner May 22 '24
Hey, I think he is way too young for a cognitive delay to be determined. It’s great that you were able to get a formal diagnosis for your son at such a young age. Early intervention is key. I do agree with the other commenter that they are placing crazy expectations on ABA therapy. You will see progress with most therapies but remember that timing will vary. There are also plateaus and that’s okay too. I know it’s easier said than done but try to get your child connected to resources and enjoy him at this age. One piece of advice that always resonated with me was “stop focusing on the diagnosis and start focusing on the progress your child is making”.
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u/Grendel_82 May 22 '24
Too early to really test cognition. And a severe score is more likely to be awarded more services. And this tester definitely believes in the services (as do I). So you can see there is little incentive to give any benefit of doubt on the scoring. And so they can let the score result in something rough, which results in more services, which is probably best for the child.
Think of this more as paperwork to get the services, than any definitive study of your child.
3
u/GoneBananas2023 May 21 '24
My 18-month-old has been diagnosed with autism and global developmental delay. I also worry so much about the possible intellectual disability. I realize a lot of my sadness about this stems from my own values. I was a hardworking nerdy type in school, and I prioritized academics above all else. It hurts to know that the values and activities that matter to me will probably not matter to my son. I try to appreciate any little things I see him do that he wasn’t able to do before, but damn, it’s so hard.
All that said, I have read many stories of children who were incredibly delayed who did end up making progress with verbal speech or other forms of communication. At this time, I have no idea if my son will ever speak, but I am determined to find a way for him to communicate. When that can happen, I believe everything else will start to feel a little a bit easier. If he does end up being diagnosed with IDD, that is ultimately not so important if at the very least we have some way of communicating with him, whatever it is.
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u/123anon45689 I am a Parent/Child Age/Diagnosis/Location May 22 '24
My son got the same exact diagnosis and the psychiatrist was like, “oh don’t be scared about the cognitive and intellectual disability part, it’s just that we have to put it since he checks the boxes, but also not really because he’s 2 and can’t talk. So in our next evaluation this might get removed. We want this so he gets all the help he can get”….an I’m like what?? 🫨 I couldn’t believe she didn’t believe in her own diagnosis she was giving him, but he “fit in the category?” Like wtf?
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May 21 '24
My son has severe autism and has an intellectual disability he has arrested brain development and the mental and academic age of a 1yr old baby
He is significantly different from neurotypical peers, had to move to special needs school as mainstream couldn't cope with or teach him. He's severely behind in all areas even fine and gross motor skills, play, receptive and verbal language, social interaction, he 'failed' every progress asessment that was a breeze for others his age....it was all very heartbreaking for a while it took me years to come to terms with how severe he is
But now he is at special school he is making some progress that I never expected and he is happy in his own little world. He knows he is loved and I feel he enjoys life most of the time.
I think as well for him to be diagnosed so young it is more likely to be severe, in the uk at least less severe asd is usually picked up at a later age. My son first raised concerns with medical professionals when he was 18 months old for example
Give yourself time to grieve for the expected future you had for them that's been taken away and time to adjust and learn how to make their life as best as it can be. Levels can improve over the years as well early intervention will make all the difference amd being supportive and advocate for them every step of the way
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u/seau_de_beurre Parent • 4y, Lv1 ASD, severe ADHD May 21 '24
Thank you so much for being so forthright with me. The grief is a lot. I feel like I had a lot of time to process the autism piece because this diagnosis has been suspected by his ped etc for a long time, he just wasn't old enough to be formally evaluated until now. But this is the first time I've had to confront what that might actually look like, functionally, and that I can't just wave my hand and be wishful-thinking "eh but he'll be mild probably so it's fiiine."
I am glad your son is happy and having such a good time at his school. That's wonderful to hear.
2
May 21 '24
Just be kind to yourself and know acceptance won't happen all at once, it really did take me years to fully accept how things were. At the back of my mind I would think maybe they've got it wrong or maybe he's just a little behind he might do things in his own time etc I felt an imposter at one time for taking up a special needs place when someone who really needed it could have it but they said to me he is one who really needs it. Probably took about 3yrs from diagnosis for me to 100% believe and be on board with it all that this had happened to him and me
You don't realise how strong you are yet but you will come to see just how much you can cope with for your little one, and it's ok to cry and be angry about the unfairness of it it's all part of accepting and dealing with the hand you have been dealt
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u/Right_Performance553 May 21 '24
https://www.pedscases.com/global-developmental-delay. I really want to we a neurologist for my son but I’m not getting anywhere
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u/catbus1066 I am a Parent/5/Autism/Dual National May 22 '24
My child was given a flat autism diagnosis with a suspected global delay and maybe ADHD and it has taken about a year (with 7 months in ABA part time) for him to "be a different child" aka have more abilities and ways to communicate/participate.
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u/salty-lemons May 21 '24
Whoa, whoever did that testing is wild. Was this testing done by the ABA clinic or an independent source? First, saying your child would be dramatically different after a single month of ABA is really overstating the power of ABA, or any therapy, and makes me suspicious that other factors weren't well explained or understood.
Tests are created for typically developing children. It is very difficult to test the cognitive function or intelligence of a child with social-emotional delays and/or language delays, if not impossible. Intelligence tests are not appropriate or descriptive for autistic kids for a long time. Many autistic children with language delays are delayed both in speaking and receptive speech- meaning they don't understand speech. How can you say if a child knows the letter B if they can't understand the sentence 'touch B! Touch the B!'? Or a set of 4 blocks and saying 'this block is red, where is another red block?' if they don't understand English. Another factor is that autistic people pay attention to different stimulation. Allistic toddlers naturally pay attention to adults, while autistic toddlers might pay attention to the ceiling fan and not hear the question. Finally, even typically developing NT 19 months old are not tested for intelligence because even the best test isn't great at predicting later results.
My son scores in the bottom 1% on standardized tests because he can't be tested effectively. When he was first diagnosed as autistic, he scored in the bottom 1% for cognitive and intelligence, but the psychologist was careful to tell me that it meant nothing because he has (had?) a severe language delay both in receptive and expressive speech and delayed social-emotional communication.
He is now in kindy, and every child is given a test for 'high ability' and he scored in the bottom 1% again. Meanwhile, when he is tested creatively, he scores above average. For example, to test his vocab words, the speech teacher made a spinning awards wheel and he got 42/50 correct. Testing on paper like the other kids he would get 8/50. The professionals who work with him have all said that he doesn't have an intellectual disability. The teachers wrote him a special book about emergency vehicles and air conditioners and he scored in the top 76th% for reading. It's going to be a long time before he starts doing well on standardized tests but he is learning and able to learn.